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ECHO Newsletter V flu jitters by benbenzhou

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ECHO Newsletter V flu jitters

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									ECHO Newsletter Issue 59                                                                              Registered Charity No. 287475




Newsletter
Spring 2010
ECHO CHRISTMAS PARTY 2009
Once again we had a fantastic Christmas            for coming to the party and chatting to the
Party! For the fourth year running it was held     children and their parents. Thanks to
at Millwall Football Club. It was lovely to see    member Joanna Blewett for arranging his
familiar faces and so many of our new              visit.
members too.
                                                   Huge thanks go to our wonderful Father
The afternoon was great fun with families          Christmas Len Palmer for once again giving
enjoying the wonderful entertainer Mr              up his time to make it such a special
Looney Balloony, the soft play, the scalextric     experience for all our children.
and all the arts and crafts activities and of
                                                   Lastly thanks to the committee members
course a visit to santa!
                                                   who along with their families and friends
I would like to say a big thank you to             helped set up, run stalls and even clear up
Veronica and all the staff at Millwall FC for      afterwards. I am very grateful to all of you for
their help and hard work all day.                  you help. Jessica Cattermole
Also thank you to Andy Day from CBeebies




                FOR ETC NEWS AND EVENTS, PLEASE READ PAGES 19 AND 20

                                                  Main photo: Thomas Blewett See pages 14 - 17
CONTENTS                                        ECHO NEWS                                                                                                                                                                                                             ECHO NEWS

Page 2-3 ECHO News                                          Chair and Vice Chair required                                                                                My experience as an ECHO volunteer
Page 4-5 Alfie’s Story                          We are sad to announce that at the AGM this year Nick de Naeyer will be                                                                 straightforward, but it has helped and we
                                                stepping down from his role as Chair of ECHO, although we are delighted                                                                 need to kick it off again in 2010 with fresh
Page 6-7 Fundraising                            that he will remain with us as a Trustee. Earlier in the year Margaret Arnell,                                                          gusto.
                                                our Vice Chair, emigrated to Australia.                                                                                                 The great thing about ECHO is that it is
Page 8-10 Keira’s Story                         We are taking this opportunity to refresh our Board by advertising in the                                                               evolving and not everything works, but there
                                                Guardian and in particular would like to invite expressions of interest from our                                                        is no blame culture and the people are very
Page 11 ECHO More News                          members. We see it as being crucial that we appoint somebody to the Vice                                                                supportive. We are not too serious and
                                                Chair role with experience of ECHO or congenital heart disease, although we                                                             recognise that we all have much in common
                                                are open to the background of the new Chair as long as they have experience                                                             both in our experiences and in the desire to
Page 12-13 Hospital News                        of chairing Boards and Committees.                                                                                                      help others. We are here for families and
                                                                                                                                                                                        that is central to our ethos. I am on the
Page 14-17 Thomas’ Story                        Both roles are Trustee roles, but in addition the Chair will take control of                                                            fundraising subgroup, which meets every six
                                                meetings, be able to demonstrate that they can listen to and understand a wide                                                          weeks or so for an evening, usually in a pub
                                                range of views, present information clearly and concisely, and get clarification of                                                     or bar, to share ideas and progress. We
Page 18 Milestones                              relevant points, enabling the Board to make effective decisions. The Vice Chair                                                         have a good time and often get some really
                                                will carry out the Chair's duties in his/her absence, and will also provide support                     Grant Taylor                                                                                     Richard Parsons
                                                                                                                                                                                        good work done leading to some good
Page 19 ETC News                                and assistance to the Chair in carrying out his/her responsibilities as a ‘critical     I had always had the feeling that I wanted to   outcomes.                                          The Evelina with Transposition of The Great
                                                friend’ and sounding board. S/he may agree to take on specific responsibilities         volunteer for a cause of some kind, but                                                            Arteries at four weeks old. At the time, I
                                                from the Chair, e.g. inducting new trustees.                                                                                            As a charity, we have come a long way in
Page 20 ECHO Contact Details                                                                                                            hadn’t found a cause that I cared enough
                                                                                                                                                                                        the past 10 years, but we acknowledge that
                                                                                                                                                                                                                                           remember feeling like a totally helpless
                                                For both roles we will require people with leadership skills, experience of             about to want to give time to. Since my son                                                        bystander, merely able to watch as others
                                                                                                                                                                                        there's still so much we could do to improve
                                                committee work, the ability to facilitate discussion and decision making, tact          Charlie’s heart conditions are no longer a                                                         took complete control of his care and
 Coffee morning in Brighton I am holding                                                                                                                                                the support we offer and how we operate,
                                                and diplomacy, strong communication and interpersonal skills and impartiality,          cause for much concern I have wanted to                                                            functioning, as we sat in a space with so
 a coffee morning at my home in Brighton                                                                                                                                                but what I recognise is that as a team we all
                                                fairness and the ability to respect confidences.                                        help others, but I didn’t know how I could                                                         much equipment that it could have been from
 on Thursday 25th March 10am-midday.                                                                                                                                                    bring something completely different. Some
                                                                                                                                        contribute or even whether I would be any                                                          the deck of the Starship Enterprise.
 To let me know that you can come and                                                                                                                                                   people want to help with events, others
                                                                              The recruitment process is now open with a                good at it.
 for directions please call on the ECHO                                                                                                                                                 bring professional experience such as              Suffice to say that having saved his life and
                                                                              closing date of the 19th March 2010. If you are
 mobile 07943 625031 or email me at                                                                                                     As a family we hadn’t engaged with the          finance. We don’t all have the time to attend      making him ‘brand new’ again, my wife De-
                                                                              interested and would like more information,
 admin@echo-evelina.org.uk.                                                                                                             support available through ECHO, but I was       every Committee meeting but will contribute        Ann and I decided we wanted to ‘give
                                                                              including the full role profiles for these posts,
                                                                                                                                        aware of the organisation and wrote to Jo       by email to debate and in other ways when          something back’ to the hospital and joining
                                                                              please contact Grant Taylor, Trustee on
 AGM and Family Day on 12th June; for                                                                                                   Wilson. Jo replied immediately and before I     we can. Other people just help us raise            ECHO is part of that goal. As a former
                                                                              07958 690 184 or email him at
 more information see page 2.                                                                                                           knew it I was invited to the AGM about          money through their sporting or personal           Commercial and Board Director of a global
                                                                              grant@peridotpartners.co.uk
                                                                                                                                        eighteen months ago to meet the team and        endeavours, while some just want to be on          marketing communications group company, I
 Coffee morning in St Leonards on Sea                                                                                                   start to get a feel for what ECHO was all       a hospital ward supporting people directly         hope to be able to use some of my people
 Rosie Wheldal will be holding a coffee                                                                                                 about. I attended a couple of Committee         when they are most in need. It takes all           and commercial skills in meeting the
 morning at her home on Tuesday 27th             London Children's Ballet perform                                                       meetings to listen and learn and just found     sorts, and I’m still not sure that my              challenges set by such a dynamic and
 April 10am-midday. Please email Rosie                                                                                                  myself talking more, asking questions about     contribution is that great, but one thing has      growing charity. Nowadays I am the co-
 at east.sussex@echo-evelina.org.uk if           "Ballet Shoes"                                                                         why we did things, and often why we didn’t      become clear, and that is how much we rely         owner of a (comparatively small) construction
 you fancy joining her. She would love to                                                                                               do others. I soon found myself volunteering     on each other to get things done.                  & development company, which requires
                                                 The Children's Heart Federation are organising another trip to the London
 see you!                                                                                                                               for tasks, looking into one thing or another                                                       thinking big on small budgets – a challenge
                                                 Children's Ballet this year. The performance will take place in the afternoon on                                                       Where else would I have had the chance to
                                                                                                                                        that would help the team, and after a few                                                          that every charitable organisation faces.
 Friday 23rd April London Children's             Friday 23rd April 2010 at the Peacock Theatre in London. This event will be                                                            build Santa’s Grotto, find the opportunity to
                                                                                                                                        months I no longer felt like an outsider.
 Ballet see page 2 for details.                  organised and funded by the Children’s Heart Federation who are asking for a                                                           abseil down Guy’s Tower and eat Tapas with         Although something I would never wish any
                                                                                                                                        Other new people joined the team and
                                                 £10 deposit per family. This will be returned to you after the event or you may                                                        new friends of a summer evening near               parent to go through, I do feel enormously
                                                                                                                                        change has become more of a feature at
                Children's Heart Week            wish to help CHF by making this a voluntary contribution towards the cost of                                                           London Bridge? I didn’t know before I joined       privileged to have been accepted as an ECHO
                                                                                                                                        ECHO and we will always welcome new
                  8th-16th May see page          the event. Tickets are strictly limited and on a "first come, first served" basis.                                                     ECHO.                                              Committee Member and Ward Visitor and I
                                                                                                                                        people who want to offer their time and can
                   11 for more details and                                                                                                                                                                                                 am very proud to be associated with such a
                                                 To put your name down, please contact Children's Heart Federation direct (not          help in some way.                               If you feel that you can contribute in some
                    ideas on how to get                                                                                                                                                                                                    fantastic team of committed, caring and fun
                                                 the ECHO office!): Samantha Johnson 0207 422 0630 or email                                                                             way, please get in touch, we would love to
                    involved.                                                                                                           My big contribution so far has been to run a                                                       people.
                                                 samanthaj@chfed.org.uk.                                                                                                                talk to you about how you can become
                                                                                                                                        review of everything we do as a Charity and
                     Saturday 17th July                                                                                                                                                 more involved.                                     Richard Parsons Member
                                                 Don't miss a wonderful opportunity to see these amazingly talented children            how we organise our work. The aim is to be
                    Sleepover at the             perform.                                                                               more focused, plan better and therefore to      Grant Taylor Trustee                               You can read more about Richard and his
                    Science Museum for                                                                                                  be more effective in what we do with the                                                           wife De-Ann's generous contribution to the
                   8-11 year olds see            Please note, the 23rd April is in term time, so please ensure you will be able                                                         I joined ECHO in September 2009 after our
                                                                                                                                        resources we have. It hasn’t been                                                                  Evelina on page 12.
                  page 11 for details.           to take your children out of school before reserving tickets.                                                                          son Oliver was admitted in an emergency to



                                                 SAVE THE DATE Saturday 12th June 2010                                                                  E-MAIL ADDRESSES AND PHONE NUMBERS WANTED!
       Dates for                                       ECHO AGM and Family Day                                                          In the next month or so we will start using a new database system
                                                                                                                                        (kindly funded by the Lakehouse Charitable Trust) which will enable
                                                                                                                                        us to communicate more effectively with members. The new system
                                                                                                                                                                                                                 take place by email. We therefore encourage you to let us have
                                                                                                                                                                                                                 your email address if we don't already have it. We are also missing
                                                                                                                                                                                                                 a lot of phone numbers due to an error with our old database so
      your Diary                                 Following the success of last year's AGM and family day we have booked this
                                                 year's already so you can "save the date". We will returning to the Grange City
                                                 Hotel, near Tower Bridge, who looked after us splendidly last year. You will receive
                                                                                                                                        will enable us to target our correspondence and emails and we
                                                                                                                                        envisage that an ever-increasing amount of our communication will
                                                                                                                                                                                                                 please send your email address and phone number through to
                                                                                                                                                                                                                 admin@echo-evelina.org.uk as soon as possible.
                                                 a formal invite soon but in the meantime please make a note in your diary!
                                                                                                                                             DON'T MISS OUT ON INFORMATION OR INVITATIONS - LET US HAVE YOUR EMAIL ADDRESS TODAY!


02      Evelina Children’s Heart Organisation                                                                                                                                                                                          Evelina Children’s Heart Organisation           03
        Spring 2010                                                                                                                                                                                                                    Spring 2010
ECHO ALFIE'S STORY                                                                                                                                                                                                                   ECHO ALFIE'S STORY




Alfie's Story
                                                                                                                                             Alfie was fine. No one knew why he had
We were so excited to find out that I was pregnant. When I went for                                                                          been bleeding.
my 20 week scan measurements were taken and things were looked                                                                               After days of discussion about whether or
at, as they are, but our little bundle had put its hand over its heart.                                                                      not to close his PDA they decided not to.
Four weeks later after going back and forth for scans to see the                                                                             Alfie was now 4lb 8oz, before the
baby’s heart, the junior doctor looked at the senior doctor who had                                                                          operation he was 5lb 11oz. Alfie was not
                                                                                                                                             putting on weight well but after six weeks
taken over the scanning. Four more doctors appeared all of a sudden
                                                                                                                                             living in the hospital and Ronald
and the senior doctor told us that it looked like one side of our baby’s                                                                     McDonald House Alfie started putting on
heart was smaller then the other and that I needed to go to London.                                                                          weight again. So we left our family in
                                                                                                                                             London, the lovely nurses who reminded
                                                                                                                                             me to eat and go to go to the Ronald
We went to the Evelina Children's               critical Pulmonary Stenosis. Bobby and I       temperature of over 38 degrees, the
                                                                                                                                             McDonald house at night, and moved to
Hospital and had a scan which was hard          just sat there, took all the information       second side effect of the drug to keep the
                                                                                                                                             our local hospital and a week later, at
as our little one was lying in a funny          leaflets and did not say a lot.                PDA open. The doctors decided that it
                                                                                                                                             seven weeks old, we were home and
position, story of my life! At that time my                                                    was time for Alfie, at 8 days old, to have
                                                The next twelve weeks flew by with a                                                         Alfie had finally reached his birth weight
husband Bobby held my hand for the                                                             his operation to balloon his pulmonary
                                                wealth of scans. We did not know                                                             again.
whole scan, over an hour in total. Then                                                        artery and put a PDA stent in to keep it
                                                whether we were having a boy or girl. I        open. He was so good, he had his
the doctor turned round and said the one
                                                was due to give birth at 38 weeks but          operation done in the cath lab and did
thing that made mine and bobby’s
                                                our baby had other ideas and I went in         not cry before I left him, he was so
stomachs drop ‘your baby has something
                                                to labour at 36 week and 1 day. The            peaceful. The operation took longer than
wrong with the heart’. My little baby had
                                                labour was not easy and I had to have a        expected as Alfie's pulmonary artery
a hypoplastic right heart, ASD, VSD and
                                                C-section after 24 hrs. Alfie was born         would not stay open after the first
                                                weighing 5 lb 8oz, he was quiet and all        ballooning and had to be ballooned
                                                Bobby kept saying is we have a boy. Alfie      again.
                                                was rushed away but they showed me
                                                him quickly and I noticed his bright red       Alfie now started being a monkey! After
                                                hair. I did not get to see Alfie again         the operation he needed to stay on the
                                                before they had to put him on a ventilator     ventilator a bit longer for his lungs and
                                                at 2 1/2 hrs old because of the medicine       heart to cope with the new circulation.
                                                                                                                                             The scans on his heart have been good
                                                they had to give him to keep his PDA           Alfie had been put on heparin a blood
                                                                                                                                             so far. He has had a cold but after a stay
                                                open was affecting his breathing. Alfie        thinner and was ok. There had been
                                                                                                                                             in hospital for that he seems much better
                                                did ok, he had a few side effects from the     having a little bit of blood in his feeding
                                                                                                                                             now. It is now a sitting and waiting game
                                                drug to keep the PDA open, the first was       tube but the nurses said it was nothing to
                                                                                                                                             for Alfie to see when he out grows his
                                                the jitters as the nurses called it in PICU.   worry about. A few days later he was
                                                                                                                                             shunt. Alfie is still not big, he is seven
                                                After two days the nurse in PICU said that     taken of the ventilator and ready for the
                                                                                                                                             months and weighs 11lb 2oz. We have
                                                they were going to take him off the            trip to Savannah again. As we were
                                                                                                                                             lots of other appointments as Alfie had
                                                ventilator and I would get to properly         about to leave I was smiling and looking
                                                                                                                                             an MRI scan that showed he has too
                                                hold Alfie. Alfie was very puffy from the      at Alfie when he went pale and was all
                                                                                                                                             much fluid between the brain and skull,
                                                ventilator.                                    of a sudden being sick with blood. I
                                                                                                                                             what this means we do not know.
                                                                                               called out and the doctors came. There
                                                He was a trooper and went up to                were about 5 doctors around his bed.
                                                                                                                                             Instead of hoping Alfie will walk on his     Alfie has been through so much but
                                                Savannah ward before I could blink. He                                                       first birthday we are just hoping for him    every day he smiles at me and I think
                                                                                               Alfie was bleeding from all of the places
                                                was very good at this time. He didn’t take                                                   to be sitting. Alfie has been through so
                                                to feeding as he had a high pallet and it
                                                                                               they had put canulas and where they
                                                                                                                                             much but every day he smiles at me and
                                                                                                                                                                                          what a strong little champ.
                                                                                               had tried to get canulas. They could not
                                                made him very tired, so he was tube fed.                                                     I think what a strong little champ.
                                                                                               get one in so they had to put one in the
                                                The nurses were so patient and helped          bone in his leg and put him on the            Emma Ormrod
                                                Bobby and I learn to tube feed him. After      ventilator again. They stopped the
                                                a few days Alfie developed a                   heparin for 24hrs and restarted it and

04      Evelina Children’s Heart Organisation                                                                                                                                                                      Evelina Children’s Heart Organisation   05
        Spring 2010                                                                                                                                                                                                Spring 2010
ECHO FUNDRAISING                                                                                                                                                                                                                                                          ECHO FUNDRAISING




Fundraising                                                                                                                                              Fantastic                                                                    A makeover for the parents’ room
                                                                                                                                                         Fundraisers -                                                              When the Evelina Children’s Hospital opened just over 4 years
                                                                                                                                                                                                                                    ago, we were very proud to have sponsored the lovely parents’
                                                                                                                                                         Amanda,                                                                    room on Savannah Ward and were able to provide all the
                                                                                                                                                         Adam, Katie                               My
                                                                                                                                                                                             Katie, S team of help
                                                                                                                                                                                                     o             e
                                                                                                                                                                                                                                    equipment and furniture in there through the fundraising efforts
                                                                                                                                                                                                                                    of our members and some very generous donations from
                                                                                                                                                         and Lucy!                            Me, Ciaphie, Jay, Cla rs -
                                                                                                                                                                                                       ran, Sa      ire
                                                                                                                                                                                                              rah an . John,        individuals and companies. We know from what you tell us that
                                                                                                                                                                                                                     d Lucy         the room is very highly valued by families who are staying up on
                                                   Savannah with a screaming baby go and              There was a fantastic atmosphere and was           Amanda Prentice and her family and friends have
                                                   look for one of the chairs!" Thank you for         very well supported by lots of friends and                                                                                    the ward with their child and is used constantly, but it’s now
Thank you for your fantastic                                                                                                                             spent the last couple of years raising money for ECHO and we               getting a little tired looking. We have been talking to the Matron
                                                   supporting ECHO Louise and Dylan!                  family. My house did resemble some kind of
fundraising and generous                                                                              souk and smelt a bit like one too, with all the
                                                                                                                                                         are extremely grateful for all their hard work and generosity.             Debbie and two Sisters, Jenny and Katherine about giving the
donations over the winter                          Thank you to Kerry and Paul Auger for                                                                 Amanda has written a little bit about their fundraising below. If          room a makeover, and they have spoken to parents about what
                                                                                                      different aromas of soaps and food! It was         you would like to make contact with Amanda for hints and tips
months. As always we have                          raising a fantastic £780 by organising and                                                                                                                                       they think is needed – this is what they’ve come up with:
                                                                                                      lots of fun as people shopped and chatted          on fundraising you can email me at admin@echo-
                                                   hosting a Quiz Night.
received too many contributions                                                                       and had coffee too. We managed to raise            evelina.org.uk and I will send your details on to Amanda.                  • Coin operated lockers (X12) for storage of bags/valuables
                                                                                                      just over £2000, which was fantastic. We
to be able to mention everyone                     We received a donation of £360 from Julian                                                                                                                                       • New sink unit with cupboards under.
                                                   Scofield whose eldest son Nicholas                 had some very generous private donations,          Lucy's diagnosis was a big shock to us to say the least!! The
but here a few we would like to                    underwent heart surgery at the Evelina in          which helped to get to this sum. I am very         support that we received from ECHO was amazing, and I can't                • Butchers block type table with separate (cheap) wipeable
share with you.                                    2007. “The care he received from all he met        pleased that we were able to send the              imagine a world where ECHO doesn't exist. I decided very early               boards
                                                   at the Evelina was fantastic and he made a         money to ECHO and hope that it will help           on that I would do all I could to "give back" to ECHO. I also found        • Table for tea / coffee / toaster – (they want to get rid of the
                                                   rapid recovery. He is now a healthy and            others." Thank you Selina, what a great way        that by putting my efforts into something else, helped me to feel            “medical-looking” trolley that is currently in use).
                         Member Louise
                         Cooper managed to
                                                   energetic five (and a half) year old!” Thank       to raise money.                                    like I was regaining control.                                              • Wall mounted large flat screen TV with integrated DVD player
                                                   you very much Julian.
                         raise almost £400 by                                                         And lastly but by no means least, thank you        We've done a few things to raise money and awareness for ECHO              • Lockable cupboard (for DVD’s etc)
                         selling a Meerkat!                                  Selina Bunting           to two of our younger members for their            including, selling ECHO merchandise, having charity barbecues,             • Lockable cupboard for Teenage patients’ “stuff” (i.e. books,
                         "Our baby son Dylan                                 raised an amazing        fantastic fundraising. Maisie Evans aged           charity parties, even just talking to people can generate                    DVD’s, computer games etc)
                         was born only last                                  £2003. "I held a         three raised £93 by making and selling fairy       donations. Lucy has been in local newspapers and a magazine
                                                                                                      cakes and eight year old Joe Gardiner              as well which raises awareness of Congenital Heart Disease and             • 2-3 seater sofa
                         August and by mid-                                  charity fair in my
                         November he was in                                  house in November        raised £50 at a car boot sale. Thank you so        generates not only donations and awareness, but also has                   • Cushions
                         intensive care at St                                to raise money for       much to all of you. Jessica Cattermole             helped me to find new friendships.                                         • 2-4 dining chairs
                         Thomas's with heart                                 ECHO. We are very
                                                                                                                                                                              Our main fundraising event is our Halloween           • Notice board to replace white board
          Dylan          and respiratory                                     keen supporters of
                         failure. Unbeknown                                  ECHO as both our                Good luck to all the brave people                                party. We have held two parties now, and              • Coffee table (with child friendly round corners!)
                                                                                                                                                                                                                                    • Water fountain
                                                                                                           running for ECHO in the 2010 London                                 have raised £800 from those alone. which
to us all, he had a rare heart condition,                                    children Harry (12)
                                                                                                             Marathon. We have seven people                                    has been divided between ECHO and
called PJRT, which causes his heart to beat           Archie and Harry       and Archie (9) have
                                                                                                        running with ECHO places they are ECHO                                  Ronald McDonald House. To raise money               • Possibly a Computer ?
too quickly. He was readmitted on Christmas                                  small holes in their
                                                                                                            members Pamela Bryant, Matthew                                      at the parties we ask for donations, have           Can you help us to help the hospital by providing any of the
day and Boxing day as he had a flu (we all         hearts. Harry had heart surgery at St
                                                                                                            Woodward, James White, Michael                                       raffles, lucky dips etc We do things for           items on the above list? Do you have any contacts (friends,
missed Doctor Who) and so we were given a          Thomas’ when he was 3 to close his VSD
                                                                                                           Sanford and Nicola Hartley and also                                    free too, such as fancy dress competitions        family, colleagues, employers) who might be able to donate
limited edition Harrods Meerkat. We spent          and Archie does not need surgery, although
                                                                                                           Emma McKie and Barry Vickery who                                        to make sure that as well as raising             anything (new items only, please, no second hand)? Would you
almost three weeks at the hospital originally      we did think he may have to have key hole
                                                                                                         are friends or family of ECHO members.                                     money, we also have some fun!!!                 be willing to fundraise to provide a particular item (or two)?
and found the parents room really useful           at some point. They both have small ASDs
                                                                                                          We also have many others running for                                                                                      Would you like to make a donation specifically to purchase
and so we decided to sell the Meerkat to           and we see our specialist once a year now.                                                                                      I would be happy to help anyone who
                                                                                                           ECHO with their own places including                                  e
raise money for ECHO. A generous man               Although not complicated and the boys                                                                                  d, Kati n would like some help or ideas on how            something from the wish list?
                                                                                                         Michael Sanford's brother Tom Sanford                     ladybir      ve
paid £300 for the soft toy which with Gift Aid     being well we both felt that we would like to                                                         Lucy the fairy, and a e !!   to raise money for ECHO.                      If you think you can help in any way, please contact Jo Wilson
                                                                                                            and member Ben Wilkie's brother Ed                   n              e
means a donation of almost £400. In fact           raise money for this worthwhile charity                                                              the neo r than usual m
                                                                                                         Wilkie. Thank you so much to all of you           scarie                   Amanda Prentice                                 (director@echo-evelina.org.uk) as soon as possible.
the buyer's daughter was seriously ill as a        having seen so many sick babies when we                for choosing to raise funds for ECHO. If
child and was on a heart and lung machine.         were in hospital with Harry and realising                you would like to support our brave
Thanks to all the kindness of the staff at the     how comparatively lucky we are. I had 10                    runners then please go to the
Evelina and to the support provided by             stalls in my house, selling, jewellery, clothes,

                                                                                                                                                               LAST
                                                                                                          fundraising page on the ECHO website                                                      We are delighted to have been able to confirm
ECHO, which made a hideous experience              Christmas food, soaps, furniture, cards, and          and follow the justgiving link to find their                                               another charity abseil down Guy's Tower on Saturday
better, we have also given three baby chairs       things for the home. All the stall holders                        justgiving pages.                                                              15th May 2010. This will be the last year ever that

                                                                                                                                                            CHANCE
(which either rock or wobble babies to sleep)      donated 10% to ECHO and we had an
to the ward, so if you're a parent on              honesty pot for tea and coffee and cakes.                                                                                                        Guy's Tower will be "abseilable" as the Trust is
                                                                                                                                                                                                    refurbishing the exterior of the building starting in 2011,

               WAITROSE COMMUNITY MATTERS FUNDRAISING SCHEME                                                                                               TO ABSEIL                                so this will be your last chance to play
                                                                                                                                                                                                    Superman/Wonderwoman and raise money for ECHO


                                                                                                                                                              DOWN
                                                                                                                                                                                                    at the same time. Last year, we managed to fill the 35
     Do you have a local Waitrose store? If you have, you will               is to fill in one of the forms available next to the collection                                                        places in no time at all, with a waiting list at the end,
     probably have noticed the large perspex "Community Matters"             boxes and drop it off at the customer service desk in store.                                                           and raised a colossal £31,000 in the process, so if
     collection boxes in store, filling up with green counters as
     customers decide which worthy cause they would like to
                                                                             Please give the contact details for ECHO as Jo Wilson, PO Box
                                                                             5015, Brighton, BN50 9JR Tel: 07921 775795. We have                              GUY'S                                 you'd like to have a go this year, and are confident you
                                                                                                                                                                                                    can raise £200 or more sponsorship, please reserve

                                                                                                                                                             TOWER!
     support. For each green counter deposited in the box,                   already been nominated in two different stores (Marylebone                                                             your place as soon as possible by emailing Jessica
     Waitrose donate £1. Why not nominate ECHO to be one of the              and Bloomsbury) and Waitrose have, in total, generously                                                                Cattermole on admin@echo-evelina.org.uk.
     charities of the month at your local branch? All you have to do         donated £531, which is fantastic!.



06         Evelina Children’s Heart Organisation                                                                                                                                                                                                       Evelina Children’s Heart Organisation             07
           Spring 2010                                                                                                                                                                                                                                 Spring 2010
ECHO KEIRA’S STORY                                                                                                                                                                                                                                                       ECHO KEIRA’S STORY




Keira’s Story
                                                  our twenty-two week scan. We were really          pulmonary artery should be, carrying
                                                  looking forward to seeing our baby on the         deoxygenated blood around the body. He or
                                                  monitor again.                                    she would need to have an arterial switch
                                                                                                    operation during open heart surgery a few
                                                  As we sat in the waiting room, I clearly
                                                                                                    days after birth.
                                                  remember reading through the form you
                                                  have to sign, consenting to the scan, and it      We were beside ourselves with worry and
                                                  said that the sonographer may call someone        felt completely devastated. This was the sort
                                                  else into the room for a second opinion if        of thing you saw on television or read about
                                                  something doesn’t seem quite right. I             in magazines, not something you ever
                                                  thought to myself how awful that must be –        imagine would happen to you. They showed
                                                  not imaging for one second that it would          us to a quiet room where we sat, holding
                                                  happen to us. Sure enough, after being told       each other, in utter disbelief. What we did
                                                  to go away and walk around for a few              know though was that we loved our unborn
                                                  minutes as they couldn’t see the baby’s heart     baby so much and wanted him or her as
                                                  properly, there were two sonographers             much as ever. The thought of not carrying on
                                                  looking closely at the screen, agreeing that      with the pregnancy never even entered our
My husband Damian and I had                       the heart didn’t look right and telling us we’d   heads. How could it? I could feel the baby
fertility problems when trying for                need to go to King’s College Hospital for a       moving inside me everyday. It just wasn’t an
our first baby, due to my                         more specialised heart scan. We couldn’t          option. We were told the operation had a
                                                  believe it. I felt sick with worry. It was a      90% success rate and felt a little bit better
polycystic ovarian syndrome. As                   Thursday and fortunately an appointment           hearing that. We owed it to our baby to go
the months passed without                         was available the following morning. We           ahead.
success we wondered if we                         couldn’t have waited over the weekend, it
                                                                                                    That same day we had another general scan
                                                  would have been torture. We went home in
would ever fulfil our dream of                                                                      just to make sure there were no other
                                                  a daze. Our families were very supportive
                                                                                                    problems. We hadn’t planned on finding out
                                                                                                                                                         It’s amazing how someone so tiny can cope with
becoming parents.                                 and telling us to think positively…it could
                                                  turn out to be nothing. We barely slept a
                                                                                                    the sex of our baby, as we didn’t with Liam.         something so major happening to their body.
                                                                                                    This time however, as we’d just been told
                                                  wink that night. I couldn’t bear the thought
After two years, and with a little bit of help,                                                     about our baby’s heart condition, it felt right
                                                  that there might be something wrong with
we were absolutely thrilled to find out we                                                          to know and we both cried as we were told
                                                  our baby and really tried to convince myself                                                        parents-to-be who were in the same                   daughter, Keira Claire Natasha Jeal, entered     her body. Her Echocardiogram revealed a
were expecting our first baby and were                                                              it was a girl. I have never felt so happy and
                                                  that we would be told it was fine.                                                                  situation as us. We kept in touch with some          the world by caesarean section, weighing 6       small muscular VSD, that hadn’t been
overwhelmed when our son Liam was born                                                              so sad at the same time. We were expecting
                                                                                                                                                      of them and they are now brilliant friends           lbs 13 oz. I remember lying there crying and     diagnosed antenatally, but we were told that
in February 2007. He was our perfect,             We travelled in the rush hour that Friday         a beautiful baby girl, but we had no idea
                                                                                                                                                      who we meet up with regularly.                       shaking. We’d just met our daughter for the      it would close by itself in time and that they
gorgeous little boy and we were so proud.         morning. I looked around the packed train         what it would be like once she was born.
                                                                                                                                                                                                           very first time – we didn’t know if she would    didn’t intend to close it during surgery.
He is almost three now, has never had any         and there were lots of people on their way to     Would she survive? Would she be able to live      I also worried about leaving Liam for the
                                                                                                                                                                                                           cry or what she would look like in her first
heart problems and there is no history of any     work. We were on our way to discover the          a normal life? How would we cope? I felt so       duration of our stay in hospital. Until now, I                                                        The days we spent on the ward before
                                                                                                                                                                                                           moments of life. As it was, she screamed her
in our families. We thoroughly enjoyed            fate of our unborn baby. We didn’t really talk    guilty. I was convinced I had done something      had never spent more than a night away                                                                Keira’s operation are a blur of expressing
                                                                                                                                                                                                           head off and was lovely and pink in colour. I
being first time parents and, even though it      much about it, but we were both so nervous        wrong during my pregnancy that caused             from him. I knew I would miss him terribly                                                            milk and constantly watching her sats and
                                                                                                                                                                                                           only had time for a quick look at her and a
was hard work, we always knew we wanted           and praying for good news. As I lay there         this. It was hard to accept it as just one of     but I had to focus on what was ahead.                                                                 heart rate monitor. Lots of family and friends
                                                                                                                                                                                                           little kiss before she was whisked away to
a brother or sister for him.                      with my already quite rounded tummy being         those things that happen sometimes.               Fortunately my sister Claire offered to take                                                          came to visit us which was great as it helped
                                                                                                                                                                                                           PICU. Obviously I couldn’t go with her, but
                                                  scanned, I was holding on tight to Damian’s       Surprisingly, the rest of my pregnancy went       some time off work to move into our house                                                             to make the days go quicker and take our
In September 2008, when Liam was 18                                                                                                                                                                        her daddy did and he brought a photo of her
                                                  hand and saying to myself over and over           really quickly. It may have had something to      and take over my mummy duties, so I knew                                                              minds off things a bit but we just wanted to
months old, we felt ready to add to our                                                                                                                                                                    to show me. It was heart breaking being
                                                  again ‘please be ok’. There were four people      do with our two year old little boy keeping us    Liam would be in very safe hands.                                                                     get to the day of her surgery. Liam loved
family and decided to try for another baby.                                                                                                                                                                separated from her; she was so beautiful
                                                  in the room and it felt like the scan went on     busy. I tried to think positively as much as                                                                                                            coming up to the Evelina, it wasn’t so much
To our surprise I fell pregnant immediately.                                                                                                          During the final couple of weeks of my               and looked so healthy and normal. All I
                                                  forever. They were pointing at the screen and     possible. I’d often lie in bed, wide awake, in                                                                                                          his new baby sister he was excited about
We were over the moon as we imagined it                                                                                                               pregnancy I began to feel more and more              wanted to do was hold her close to me and
                                                  using words we didn’t understand. Once it         the middle of the night with my hand on my                                                                                                              seeing though, it was the big red slide and
may take some time again, and the weeks                                                                                                               anxious. We were booked in to be induced             feed her and bond with her, but it just wasn’t
                                                  was over, Professor Allan took out a piece of     tummy feeling her moving about. I felt such                                                                                                             all the toys! Damian didn’t ever stay at the
of my second pregnancy began to race by.                                                                                                              on the 1st June 09. Damian, my brilliant             possible in the very beginning. As soon as I
                                                  paper. I saw the look on Damian’s face as         a connection with our little girl. She just had                                                                                                         hospital with us overnight. We both felt it
The first scan at twelve weeks went really                                                                                                            mum Mary, and I set off for the hospital and         could I went to see her. She was doing so
                                                  we realised she was going to draw a picture       to be ok.                                                                                                                                               was important that he spent some time at
well. During my first pregnancy I worried a                                                                                                           my stomach was in knots. This day had                well in PICU that they moved her to
                                                  to show us what was wrong with our baby’s                                                                                                                                                                 home with Liam each day as we wanted to
lot that something would go wrong, but this                                                         We worried a lot, but were given so much          been a long time coming. We couldn’t wait            Savannah ward the very next day. She was
                                                  heart. Then came the bad news, our baby                                                                                                                                                                   keep things as normal as possible for him. I
time around I felt so much more relaxed.                                                            support during our appointments at The            to meet our little girl but I also quite liked the   put on medication called Prostaglandin,
                                                  had Transposition of the Great Arteries (TGA),                                                                                                                                                            used to sit by Keira’s bed watching her sleep
Baby number two was on the way and we                                                               Evelina and felt we were as prepared as we        idea of her staying inside me where she was          which kept the foetal circulation open,
                                                  which means that the pulmonary artery is                                                                                                                                                                  at night, my beautiful little girl. I knew she
were so excited about becoming a family of                                                          could be for the birth of our daughter. We        safe, just for a little bit longer. Eventually, on   allowing her blood to mix so that more
                                                  where the aorta should be, carrying                                                                                                                                                                       would be a little fighter and be so brave
four! Before we knew it we were off to our                                                          attended an antenatal day, run by ECHO,           3rd June 2009 at 2.38am, our beautiful               oxygenated blood could be passed around
                                                  oxygenated blood from the left ventricle to                                                                                                                                                               when the big day came.
local hospital, Queens Mary’s in Sidcup, for                                                        which gave us a chance to meet other
                                                  the lungs, and the aorta is where the
08        Evelina Children’s Heart Organisation                                                                                                                                                                                                        Evelina Children’s Heart Organisation            09
          Spring 2010                                                                                                                                                                                                                                  Spring 2010
ECHO KEIRA’S STORY                                                                                                                                                                                                                                                    ECHO MORE NEWS

                                                 Thursday, three days after her surgery.          antibiotics for a while. She didn’t come home
                                                 Keira went from strength to strength. We
                                                                                                  with any other medication though which was           CHILDREN’S HEART WEEK 2010                                                   Is Your Child a ‘Heart+’ Child?
                                                                                                  fantastic. We have been back to the Evelina
                                                 knew it was only a matter of time now                                                               Children’s Heart Week will take place from 8th May to 16th May           We recognise that within our member families, there are some
                                                                                                  for check ups and the cardiologists are really
                                                 before we could take her home. It’s amazing                                                         and ECHO will be organising various activities to mark the week          children who have other medical conditions in addition to their
                                                                                                  pleased with her progress. They haven’t
                                                 how someone so tiny can cope with                                                                   of awareness and fund raising activities. These will include:            heart diagnosis, which may affect theirs and their family’s life on a
                                                                                                  been able to see the VSD on the last two
                                                 something so major happening to their body.                                                                                                                                  daily basis. The medical conditions may be genetic or acquired,
                                                                                                  occasions so hopefully that has closed now.        • 11th May – Official launch of the 2 new ECHO DVD’s at St.
                                                 The only set back we had was that she got                                                                                                                                    and may be part of a broader syndrome that classically includes
                                                                                                  Our next appointment is in May at our local          Thomas’ Hospital – please contact Jo Wilson for details.
                                                 an infection in her wound and needed                                                                                                                                         heart defects, or may be apparently non-related. We appreciate
                                                                                                  hospital.
                                                 antibiotics. She went down to 6 lbs 1 oz after                                                      • 15th May – ECHO abseil down Guy’s Tower                                that having additional medical diagnoses can make life even more
                                                 her surgery, but soon started to regain what     Today, Keira is a happy and healthy seven                                                                                   challenging for patients and parents/carers alike and that at
                                                 she had lost. Over the next few days she         month old. She loves her big brother and is        • All Week – awareness-raising in schools. Do you work in a              times, it may help to be able to seek out information and talk to
Keira’s surgery took place on Monday 8th                                                                                                               school, or would you be prepared to approach your                      others who have had similar experiences.
                                                 was weaned off her monitors which made           forever chasing him around the living room
June when she was just five days old. Mr                                                                                                               child’s school to do a short presentation in assembly about
                                                 me nervous. I asked for them to be put back      in her walker. When I look at them together I                                                                               If your child is a Heart+ child, could ECHO do more to support
Anderson, Keira’s wonderful surgeon, had                                                                                                               children with heart disease to help raise awareness? We
                                                 on a few times to reassure me but I              feel like I could burst with pride. Damian and                                                                              them and you?
come to see us beforehand and talked us                                                                                                                can provide packs containing fact sheets, DVD’s, a Powerpoint
                                                 gradually began to feel more confident and       I often talk about how lucky we are. We have
through what would happen. It was the                                                                                                                  presentation and stickers/badges. This could also be a great           We are very keen to hear your views, specifically:
                                                 started to believe she was actually going to     been truly blessed with two wonderful
hardest and longest day of our lives. We                                                                                                               fundraising opportunity – would your school hold a “mufti day”
                                                 be ok.                                           children. Keira’s start in life was horrendous                                                                              • How old is your Heart+ child (or if pregnant, what month is
went with her to theatre about 1pm after a                                                                                                             or a “wear a red heart day” to coincide with this, to raise
                                                                                                  for us all, but I wouldn’t change a single                                                                                    Baby due?)
long morning waiting to be called. She was       The day we brought Keira home felt like                                                               funds for ECHO? Could you hold a “heart-shaped cookie”
                                                                                                  thing about it as it’s part of who she is. We
starving and wanting my milk and I               such a milestone. I was desperate to leave                                                            bake and sale? If you have any other ideas, please do let us           • Are you interested in a Heart+ section of the ECHO newsletter
                                                                                                  were lucky, if that’s the right word to use,
desperately wanted to give it to her, but she    the hospital and missed Liam so much. I’d                                                             know – admin@echo-evelina.org.uk!                                        and website?
                                                                                                  that Keira’s heart condition could be
couldn’t have any. We stayed with her whilst     only seen him briefly about six times over
                                                                                                  corrected relatively easily and, fingers           • All Week – We will be sending out press packs in the run up            • What would you expect/like to find there?
they got everything ready and put her to         those two weeks. I didn’t know how much I’d
                                                                                                  crossed, she shouldn’t need and further              to Children’s Heart Week, featuring cases studies which so
sleep. As we turned to leave I felt like my      miss the security of having the nurses                                                                                                                                       • Would a separate discussion board on the website for Heart+
                                                                                                  surgery. We are really looking forward to the        many of you have kindly sent in to us. Keep an eye out in the
heart would break into a million pieces.         nearby though. That first night we sat on our                                                                                                                                  topics be useful?
                                                                                                  future now, all four of us.                          press and on TV.
Damian was my rock. We were both so              bed watching her sleeping in her crib. It was
                                                                                                                                                                                                                              • Do you already use organisations/websites for the non-
upset, but I really couldn’t have got through    surreal. We’d known about her heart              We would like to say a big thank you to            • Why not contact your local newspaper and ask them to                     heart stuff? What additional benefit would ECHO Heart+ offer
that day without him. We decided to leave        condition for so long and didn’t know if this    everyone at the Evelina for the first class care     write something about children with heart conditions – send              you?
the hospital and get some fresh air. It was a    moment would ever come. Now here we              given to Keira during her stay there. We are         them a brief “case study” about your child with a covering
really miserable cool day. We sat on a bench     were. Our beautiful daughter was home at         eternally grateful to Mr Anderson, he saved                                                                                 We are gathering feedback until March 31st and will report back to
                                                                                                                                                       note – please contact Jo Wilson for assistance and advice on
and had a cuddle and both fell asleep,           last, safe and sound.                            our daughter’s life. To our family and friends,                                                                             you in the Summer newsletter. Thanks in advance for your help!
                                                                                                                                                       how to go about this.                                                  Pippa Duffy
probably only for about ten minutes, as we                                                        we are so lucky to have you. You supported
                                                 Keira’s wound still hadn’t healed properly so                                                           IF WOULD LIKE TO HOLD A SPECIAL EVENT TO MARK
were exhausted. When we woke up it took                                                           us through a really difficult time and we                                                                                   P.S. All feedback will be managed confidentially, so please feel
                                                 a community nurse came round to our                                                                   CHILDREN’S HEART WEEK, OR ALREADY HAVE SOMETHING
me a second to remember where we were                                                             couldn’t have done it without you.                                                                                          free to speak frankly knowing that any medical information shared
                                                 house every couple of days to change her                                                            PLANNED, PLEASE DO LET US KNOW. WE WILL PUT A SPECIAL
and why. I looked at Damian, and we didn’t                                                                                                                                                                                    will not be traceable to you or your child.
                                                 dressing and she continued with her              Caroline Jeal                                        AREA ON THE WEBSITE TO PUBLICISE ALL THE ACTIVITIES.
say anything but I knew we were thinking
the same things. When would we hear some                                                                                                                                                                                                       You can email us on this address
                                                                                                                                                          TO GET INVOLVED EMAIL admin@echo-evelina.org.uk                                   pippa-heartplus@echo-evelina.org.uk
news? Would our beautiful daughter make it
through her surgery and be ok? The call
eventually came. Keira had made it through                                                                                                           A regular favourite in the newsletter is the section which
her operation and was doing well. We went                                                                                                            charts children’s milestones. It’s lovely to see all these                          Sleepover at the
straight to PICU to see her. She was covered
in wires and on a ventilator and she had a
                                                                                                                                                     brave children starting nursery, going off to their first day
                                                                                                                                                     at school, being bridesmaids and pageboys and doing
                                                                                                                                                                                                                                         Science Museum
big red wound on her chest, but we almost                                                                                                            things that make their mums and dads (and us) so proud.                             The Children's Heart Federation have invited some
didn’t see any of that. Keira was alive and                                                                                                                                                                                          lucky ECHO members to take part in a really exciting
we were so relieved.                                                                                                                                 However, we know that things aren’t always so positive for
                                                                                                                                                     everyone - things do go wrong, children do become ill or have to            sleepover at the Science Museum on Friday 16th July
We spent the next couple of days sitting by                                                                                                          undergo surgery and quite often we at ECHO don’t get to know                2010. The event is open to all children aged between 8
her bed, watching her and waiting for her to                                                                                                         about it until afterwards, which means we can’t offer our support,          and 11 only and their siblings in the same age group.
get stronger. The atmosphere in PICU is                                                                                                              give practical advice or even just our best wishes and moral                Drop off will be at about 5.00 pm on the Friday and pick
totally different to that on the ward, so much                                                                                                       support at the appropriate time. We know that, in the midst of a            up after breakfast on the following morning, and they will
more intense. I was really fortunate to have                                                                                                         crisis, it can be hard to find the support and empathy from others          be looked after and supervised by volunteers from both
one of the family rooms at the Evelina so I                                                                                                          when you’re feeling isolated or, frankly, just plain terrified, but do      ECHO and Children's Heart Federation. The cost to ECHO
could be with her as much as I wanted to,                                                                                                            remember that there’s a huge pool of love and empathy in the
day or night. The nurses there are fantastic,
                                                                                                                                                                                                                                 members will be £7.50, payable at the time of booking -
                                                                                                                                                     ECHO family, not to mention lots of common sense and shared
and so caring. I felt able to leave her                                                                                                                                                                                          this is heavily subsidised by CHF as the tickets usually cost
                                                                                                                                                     experience.
overnight knowing they were there and I                                                                                                                                                                                          £35.00!
know they gave her lots of cuddles. We felt                                                                                                          Please do keep in touch with us through good times and bad, let
                                                                                                                                                     us know what’s happening with your child, and let your fellow               If your child (and brother/sister) would like to take part,
so much better when she came off the
                                                                                                                                                     ECHO members support you!                                                   please contact Jo Wilson on
ventilator. She started to look like Keira
                                                                                                                                                                                                                                 director@echo-evelina.org.uk.
again. Gradually more and more tubes, lines                                                                                                          E-mail: admin@echo-evelina.org.uk
and wires were removed and she was
allowed to have small amounts of milk. She                                                                                                           Online message board:                                                            Places are strictly limited so please get in touch
was moved back to Savannah ward on the                                                                                                               http://members5.boardhost.com/echo-dialogue/                                        as soon as possible to reserve your place!


10       Evelina Children’s Heart Organisation                                                                                                                                                                                                  Evelina Children’s Heart Organisation             11
         Spring 2010                                                                                                                                                                                                                            Spring 2010
ECHO HOSPITAL NEWS                                                                                                                                                                                                                                                        ECHO HOSPITAL NEWS

                                                              Parents Pack                                                                                   COUGHS AND COLDS IN CHILDREN WITH HEART CONDITIONS
                                                     situation. We’d driven in from Maidstone to    then double-up as a bag to carry personal
                                                                                                                                                                            – A PARENTS’ GUIDE
                                                     a city with which we were both very familiar   items. In addition, we have provided hand-      Coughs and colds are an inevitable part of              underneath the ribs (recession) with              Give no more than 4 doses of Paracetamol in
                                                     with and into an area where I had              wash tablets for parents that might need to     this time of year and can be the cause of               each breath, head bobbing or                      a 24 hour period, and 3-4 doses of
                                                     previously worked. Yet other parents had       wash clothes and also some sanitary             some anxiety, especially during a baby’s first          sucking in of the area around the top             Ibuprofen. If you are needing to give it for
                                                     been ‘retrieved’ from much further afield      products, both of which are available ‘on-      winter, particularly when they have an                  of the chest and the throat (tracheal             more than 48 hours then please see your GP
                                                     and found themselves deposited into the        request’. We source the products from local     ongoing heart condition to contend with                 tug). These are all additive - it is not
                                                                                                                                                                                                                                                              If your child is on Aspirin (as a low single daily
                                                     capital with only the clothes they were        Asda and Tesco supermarkets as well as          already. Fortunately, the vast majority of              uncommon for babies to suck in a
                                                                                                                                                                                                                                                              dose), then Ibuprofen can still be given, just
                                                     wearing. It was this thinking that spawned     companies in the Midlands and Yorkshire         illnesses amount to no more than a simple               little under their ribs quite often, but if
                                                                                                                                                                                                                                                              count the Aspirin as one of the doses.
                                                     the idea of Oliver’s Army and the Parent       and deliver them approximately once every       cold and a few sleep-disturbed nights;                  it looks like they are using more and
                                                     Packs.                                         four weeks. We have also written to Asda to     however a small number of children will                 more muscles to breathe then seek                 If your child is on Aspirin more than once a
                                                                                                    see if they will allow us to purchase items     become more sick and need medical                       medical attention.                                day then it is safest not to give Ibuprofen.
                                                     Oliver’s Army is the name of an informal                                                       attention and sometimes hospital admission.
                                                                                                    ‘direct’ in bulk, as we always clear the                                                            •   Wheeziness – this sometimes                       If you require other remedies then please buy
                                                     ‘charity’ we have started to raise money for
     In May last year, our four-week old son                                                        shelves of product on our shopping trips        We have produced this guide to help you to              indicates the virus is affecting the              from a pharmacy and consult the qualified
                                                     The Evelina and Parent Packs are aimed at
     Oliver was admitted to The Evelina one                                                         and generally have to visit several stores to   navigate your way through the winter cold               chest and not just a head cold                    pharmacist on duty, as they usually give very
                                                     providing emergency admission parents /
     Friday evening as an emergency ‘Retrieval’                                                     be able to source enough!                       and flu season.                                                                                           good advice and can check that they will not
                                                     guardians with a selection of toiletries to                                                                                                        •   Colour change – either becoming
     patient. During that first night De-Ann and I                                                                                                                                                                                                            interact with any medicines your child may be
                                                     see them through their time on PICU.           It goes without saying that we will forever     Prevention:                                             pale or becoming noticeably more
     were very fortunate to be given a Parent’s                                                                                                                                                                                                               taking. It is always advisable with any over
                                                     Having presented the idea to Louise            be indebted to everyone at The Evelina for                                                              blue
     Room on the second floor, meaning we                                                                                                           It is virtually impossible to hide yourself away                                                          the counter preparation to check whether it
                                                     Dewsbury, Fiona Lynch and Jane Stenhouse       what they did for Oliver and the Parent’s       from viruses at this time of year and life has to   •   Temperature for greater than 48                   contains Paracetamol, as this would count
     were able to stay in the hospital for the       on PICU, Louise (Matron) managed to            Packs are just a small part of the lifetime
     duration of Oliver’s time in PICU. I had also                                                                                                  go on, so a common sense approach is best.              hours                                             towards the total daily dose.
                                                     obtain the relevant permissions from the       pledge De-Ann and I have made to try and
     been ‘fortunate’ enough to be able to drive     hospital Trust within just four weeks. We’d    ‘give something back’. Our next goal is         The swine flu guidelines produced by the            Warning signs – go to A&E or call an                  A cough is usually the body’s way of clearing
     into London (there wasn’t room for me in        originally looked into purchasing things you   running for the Guys and St Thomas’s Trust      Department of Health also apply to all              ambulance for these:                                  extra secretions so is usually a good thing,
     the ambulance) and so we had our own            find in hotel bathrooms but found that for     in this year’s London Marathon – for which      common viruses.                                                                                           although it can be disruptive when the cough
                                                                                                                                                                                                        •   Working hard with the breathing, and
     direct means of transport to enable me to       the same cost, we were able to buy items       we have set a target of raising between                                                                                                                   is tickly or dry. Most over the counter
                                                                                                                                                    If a member of the household is unwell then             grunting – this is making a little grunty
     return home in the early hours of Saturday      from the ‘Value’ ranges from Asda and          £5,000 and £10,000. In the meantime, it                                                                                                                   remedies for a cough are not suitable for
                                                                                                                                                    they can help by:                                       noise at the end of each breath,
     morning to collect some emergency                                                                                                                                                                                                                        children under 6 years, so it is best to check
                                                     Tesco and achieve a much larger amount of      has been an enormous privilege to be                                                                    usually when children have reached
     provisions such as toiletries and clothes                                                                                                      • Minimising direct contact, eg face to                                                                   with a doctor or a pharmacist before buying
                                                     each product. The packs include shower         accepted as a Committee Member and                                                                      this stage they look very sick
     before his operation.                                                                                                                          face (kissing goodnight for example)                                                                      them.
                                                     gel, shampoo, conditioner, comb/brush,         Ward Visitor for ECHO and we look forward
                                                                                                                                                                                                        •   If your child is tiring and becoming
     It was after Oliver was moved up to             toothpaste, toothbrush, nail file, razor,      to being involved with the hospital and         •   Use a tissue to sneeze into or when                                                                   Hospital Treatment
                                                                                                                                                                                                            less responsive
     Savannah Ward that we started to think          shaving foam, face-cloths, face wipes,         ECHO for the rest of our lifetimes.                 nose blowing, then dispose of it
                                                                                                                                                                                                                                                              If you are unlucky enough to end up in
     about our experience and how we might           shower cap and deodorant. We package                                                               immediately                                     •   If your child stops breathing
                                                                                                    Richard and De-Ann Parsons                                                                                                                                hospital the treatment is usually directed at
     able to help other parents in the same          them in a cloth drawstring bag which can                                                       •   Washing their hands after this or               •   Your child looks pale and feels colder            maintaining normal saturations (normal for
                                                                                                                                                        before contact with the child                       than normal                                       your child) and maintaining feeds. Babies
                                                                                                                                                                                                                                                              may need suctioning or a period of
             SWINE FLU VACCINATION                                                                                                                  If someone is not living in the house then just
                                                                                                                                                    ask them to avoid visiting until they are better.
                                                                                                                                                                                                        •   A rash or purple spots that don’t go
                                                                                                                                                                                                            away when you press it
                                                                                                                                                                                                                                                              nasogastric feeds while the virus clears.
              PROGRAMME UPDATE                                                                                                                      Avoid places where there are likely to be lots      Remember too to trust your own judgement
                                                                                                                                                                                                                                                              A sample for respiratory viruses (including
                                                                                                                                                                                                                                                              RSV and H1N1 influenza) should be taken on
 Some parents have contacted            responses to the vaccines. It          ARE YOU AGED OVER 10 AND                                             of people with colds.                               – you know your child best; if you think
                                                                                                                                                                                                        something is not right and are concerned,
                                                                                                                                                                                                                                                              admission.
 us recently, slightly confused by
 a recent change the
                                        emerged that a single dose is
                                        sufficient for most healthy
                                                                               HAVE BEEN IN HOSPITAL LATELY?                                        Symptoms
                                                                                                                                                                                                        even if you can’t put your finger on what             We are not admitting any child with a known
                                                                                                                                                    Typical symptoms of a cold are a runny nose,        exactly it is, then seek medical attention.           respiratory virus to Savannah ward at
 Department of Health                   children to mount a good
                                                                               We are looking for young people over the age of 11 to tell           a temperature, cough and being unsettled. It                                                              present, this is to minimise the risk of
 guidelines regarding Swine Flu         response. It is felt, however,                                                                                                                                  Treatment                                             transmission to other babies and children in
                                                                               us about their experiences of staying on Savannah Ward               is very common for a baby or child to be more
 vaccinations for children              that children who have an                                                                                                                                                                                             the ward. If your child is admitted to the
                                                                               recently.                                                            clingy, and if a child is just starting to wean     For most coughs and colds simple treatment
 resulting in a reduction in the        impaired immune function may                                                                                                                                                                                          Evelina Children’s Hospital then we will be
                                                                                                                                                    onto solids this often goes backwards and           with Paracetamol and keeping the feeds
 number of doses now                    still benefit from 2 doses.            • What did you like about it?                                        they revert to just wanting milk.                   going is enough. If fever is a concern then           informed and the team for the week will come
 recommended from two to                                                                                                                                                                                Ibuprofen can be used in those over 6 months          and see you.
                                        Most cardiac children who are          • What didn't you like about it (apart from the obvious!)?           Contact your GP if your child displays one or
 one. We have contacted Dr.                                                                                                                                                                             of age. Ibuprofen and Paracetamol work very
                                        on normal immunisation                                                                                      more of the following more serious                                                                        If your child is admitted to another hospital we
 Esse Menson, Consultant                                                       • What sort of thing would make the ward nicer for older                                                                 well together…they can either be given at the
                                        schedule and have no specific                                                                               symptoms:                                                                                                 would like to know, so please do make sure
 Immunologist at the Evelina                                                     children and teenagers like you?                                                                                       same time or spaced out and given
                                        concerns about their immune                                                                                                                                                                                           we are informed. We are always there for
 Children's Hospital for                                                       • What sort of games and equipment would make it easier              •   Being unable to take feeds                      individually. Sometimes we give Ibuprofen to
                                        function should require only 1                                                                                                                                                                                        advice if your doctors need it.
 clarification, and to ask if she                                                to pass the time and relieve the boredom?                              (sometimes because of                           children under 6 months, but this is
                                        dose of vaccine."
 feels that one dose is sufficient                                                                                                                      breathlessness or a severely blocked            unlicensed under this age and I would check           Further Questions
 to ensure immunity for heart-          If you have any concerns               Please do let us know what you think - the hospital                      nose)                                           with your GP first.
                                                                                                                                                                                                                                                              If you have any further questions then please
 children and this is what she          about this or any other issue          themselves have asked us to try and find out and
                                                                                                                                                    •   Working harder with breathing –                 You are advised to follow the instructions on         do not hesitate to contact us – as always the
 has written:                           regarding Swine Flu or the             hopefully they will make a few changes to make it a                                                                                                                            best number is the Liasion nurses in
                                                                                                                                                        some people find it hard to know                the bottle. However, you must remember that
                                        vaccination programme,                 better place for the over 10's!                                                                                          there are lots of different brand names for           020 7188 4546.
 "The issue of doses of swine flu                                                                                                                       what we mean by this, but when a
                                        please contact one of the                                                                                                                                       Paracetamol and ibuprofen, so if you are
 indicated for children relates to                                             Please contact Jo Wilson on director@echo-evelina.org.uk.                child has to work harder to breathe                                                                   Dr Aaron Bell Consultant Paediatric
                                        Outreach Nurses for further                                                                                     they use the muscles in their chest             giving both then check the labels carefully. An
 the data that emerged from a                                                                                                                                                                                                                                 Cardiologist, Evelina Children's Hospital
                                        guidance.                                                                                                       and in their neck. This is seen as              accidental overdose of Paracetamol can be
 recent study on children’s
                                                                                                                                                        sucking in of the skin between or               be very serious.



12         Evelina Children’s Heart Organisation                                                                                                                                                                                                          Evelina Children’s Heart Organisation               13
           Spring 2010                                                                                                                                                                                                                                    Spring 2010
ECHO THOMAS’ STORY                                                                                                                                                                                                                               ECHO THOMAS’ STORY

                                                                                                                                           to kick and I was being asked if I wanted      more bad news. I counted the same             Life began again from that point on. We



Thomas’ Story
                                                                                                                                           to end the pregnancy. I couldn’t               ceiling lights over and over. Professor       went to Portugal for a week to take
                                                                                                                                           comprehend. Vita explained that I              Allan confirmed our diagnosis; she            some time out together and when we
                                                                                                                                           should consider if not for this baby’s sake    asked if we had any questions. I              got back I returned to work.
                                                                                                                                           but also for any future children’s sakes. I    revealed my A4 sheet of paper filled with
                                                                                                                                                                                                                                        I contacted ECHO and spoke with Jessica
                                                                                                                                           was also told I could have an                  questions – my results of hour’s
                                                                                                                                                                                                                                        who was so lovely, patient and
                                                                                                                                           amniocentesis if I wanted or I could           googling.
                                                                                                                                                                                                                                        reassuring listening to my worries. She
                                                                                                                                           choose to do nothing.
                                                                                                                                                                                          I said it was good news about the             kindly put me in touch with another mum
                                                                                                                                           I immediately chose to have an amnio.          Downs result, Prof Allan said they            whose daughter has Fallots and had
                                                                                                                                           Not because if it came back that the           expected it to come back negative, it         undergone her correction. It helped me
My husband Matt and I were overjoyed and excited when we                                                                                   baby did indeed have a chromosome              was DiGeorge that they suspected our          through the tough times speaking to
                                                                                                                                           defect that I was going to terminate but       baby had since their aorta went to the        people who could truly empathise. I felt
discovered we were expecting our first child. I was a little anxious,                                                                      because I like to know all the facts.          right which in 25% of cases with Fallots it   isolated and at times lonely to be the
we’d fallen pregnant fairly quickly and I worried that I couldn’t be that                                                                  Whatever the future held I wanted to be        does. I took solace that a letter referred    woman expecting a heart baby. Matt
lucky. As a result we had early scans at our local private hospital at                                                                     prepared.                                      to our baby having a thymus (my               was pretty quiet but supportive. I think
6, 9 and 12 weeks ahead of our routine 12 weeks scan at our regular                                                                        At 5pm that afternoon I had my amnio. I
                                                                                                                                                                                          googling efforts said that most babies        he was staying strong for me and the
NHS hospital the day before Christmas Eve 2008.                                                                                                                                           without a thymus have DiGeorge). Wait         baby but inside felt exactly the same.
                                                                                                                                           watched the screen where our baby was
                                                                                                                                                                                          and see was Prof Allan’s response.
                                                                                                                                           moving about and kept asking how they                                                        Matt and I always seemed to be at
                                                                                                                                           could be sure they wouldn’t harm the           18 days after my amnio my mum was             hospital for scans after diagnosis. I was
                                                                                                                                           baby. They said they would use the             sitting with me trying to keep me positive    still excited to see our baby on the
All the scans eased my “mum-to-be”              night – it couldn’t have changed              We spent the drive to Kings crying and       screen to assist but there was a 1%            when the telephone rang. It was the           screen, for Matt it was filled with dread
anxiety and so on Christmas Day we put          overnight…                                    reasoning they could be mistaken. I          chance that it could cause me to               Kings midwives again. Our DiGeorge            in case they found something else
our scan pictures into Christmas crackers                                                     called the private obstetrician and told     miscarry. I couldn’t think of that 1%          result had come back and there was no         amiss.
                                                The lady asked if my nuchal scan at 12
and revealed to our families we were                                                          him the Medway hospital’s findings. He       chance. Matt had to stand in the corner        deletion on chromosome 22. Our baby
                                                weeks had been ok. Matt asked if                                                                                                                                                        In April we attended an ECHO Antenatal
expecting the following July.                                                                 said he would be very surprised if our       of the room with his back to me, he            had no chromosome abnormalities.
                                                everything was ok? The lady, a research                                                                                                                                                 Day. I was so excited to be going to find
                                                                                              baby had Fallots. This reassured me a        couldn’t watch. He stroked my hair             Your nightmare is over for now the
My pregnancy ran smoothly, no major             fellow from Kings College Hospital, Dr                                                                                                                                                  out how our baby would be induced and
                                                                                              little.                                      when the needle went into my tummy.            midwife said. I cried again…
sickness or hiccups along the way. On           Liesbeth Lewi asked if we had any heart                                                                                                                                                      meet other parents in the same
4th March 2009 we had a 22 week                 problems in our family. My Dad had a          On arrival at Kings we were taken into       Matt and I began the sombre journey            I called Matt at work but he                               situation. It was the most
anomaly scan again at the local private         couple of heart attacks 10 years back but     the Echo room where we met Vita Zidere       home at 6pm. I think we pretty much            was in a meeting. My                                           reassuring and invaluable
hospital with the obstetrician there.           I knew coronary heart disease was             a Fetal Cardiologist who would perform       cried all the way. It’s all a bit of a blur.   mum and I just sat                                                experience and I
Once again all went well and we came            lifestyle related and not hereditary. Dr      our scan. Vita told us that she would        We had to tell our families the                and cried some                                                       highly recommend
away excited that in a few months our           Lewi informed us she thought our baby         answer questions after the scan but for      devastating news when the previous             more while we                                                         it to any expectant
baby would be here. We even went out            had a heart problem. I was stunned and        now she must concentrate. I practically      night we’d called them to tell them all        waited for him to                                                      parents of heart
for dinner to celebrate.                        in denial. They must be mistaken.             held my breath throughout the 40 minute      was well.                                      call back. I                                                           babies.
                                                                                              scan where there were also numerous                                                         couldn’t tell
On the 5th March we had a 9am                   We were shown into what I refer to as                                                      The amnio results would take up to 3                                                                                 We swapped
                                                                                              other medical professions present. I felt                                                   anyone the news
appointment at our local NHS Hospital           the “bad news room”; you know the type                                                     weeks. For 3 weeks I did nothing – I only                                                                           numbers with two
                                                                                              like everyone wanted to view our scan                                                       until Daddy knew.
Medway Maritime for our routine                 with a sofa and a box of tissues. Dr Lewi                                                  stepped outside of the house to go to my                                                                            other couple
                                                                                              too – it made me feel more anxious. I                                                       When he called
anomaly scan. Matt didn’t see the point         followed and explained that she thought                                                    GP to be signed off work. I didn’t do                                                                               whose babies
                                                                                              just lay there, counting the lights on the                                                  back I was still
in going; he’d just started a new job and       our baby had a serious heart condition                                                     anything remotely normal. I just lay in                                                                             were due within
                                                                                              ceiling over and over again whilst Matt                                                     crying, poor
was anxious about making a good                 known as Tetralogy of Fallots. I burst into                                                bed, or sat on the sofa like a stuffed                                                                              weeks of ours and
                                                                                              sat anxiously next to me.                                                                   Matt probably
impression. Why did we need to go for           tears, I didn’t even know what it was.                                                     dummy and cried.                                                                                                     we are all still in
another scan when last night’s showed           Matt was stunned to silence. The Dr was       After what felt like an eternity we were                                                    thought the
                                                                                                                                                                                                                                                                       touch
all was fine? But I argued that this would      really nice, she patted me and told me        shown to another “bad news room”. I          When I wasn’t crying I googled, I              worse.
                                                                                                                                                                                                                                                                           today.
be the last time we saw our baby on a           that if she was right it could be fixed. We   was still convinced we were going to be      researched congenital heart disease until
scan until their arrival early July. How        were left alone whilst she went off to see    told all was well and it had been a huge     I knew pretty much most conditions. I
wrong could I be…?                              if we could get an Echocardiogram that        mistake. Matt thought otherwise. Matt        googled the professors and research
                                                day at Kings.                                 was right.                                   fellows at Kings. I checked out their
Being our first pregnancy I wasn’t aware                                                                                                   credentials. I wanted answers but there
of the drill so when they scanned us and        Matt and I were obviously distressed but      Vita explained that our baby did indeed      were none.
told us to take a seat outside while they       I couldn’t believe they had it right, how     have Tetralogy of Fallots and drew us a
got some paperwork signed off we never          could the senior obstetrician, whom until     picture of the anatomy of the heart and      After 4 days I received a call from Kings
questioned it. Only after sitting there for     recent years headed up our local NHS          explained the four defects. She then         Midwives to say that the Downs result
half an hour were we moaning about the          hospital’s Obstetrics dept have missed it.    went on to explain that some cases of        came back negative. A week later we
NHS and Matt being even later for work.         No – the NHS were mistaken. Matt said         Fallots have a chromosome disorder           returned to Kings to meet Professor
                                                he didn’t think so.                           such as Downs or most likely DiGeorge        Lindsey Allan who performed another
Eventually we were called back in and                                                                                                      Echo. I hoped she would tell us
                                                                                              syndrome. Something we had never
this time there were two sonographers, a        Dr Lewi returned to tell us we had a 2pm                                                   everyone was wrong or that it had got
                                                                                              even heard if. We were then asked if we
lady had joined the man that originally         appointment at Kings that afternoon.                                                       better. Matt wouldn’t sit down this time
                                                                                              wanted to terminate. Here I was, 22
scanned us. The lady scanned us and             Matt and I rushed off on our mission to                                                    he preferred to stand having sat down at
                                                                                              weeks pregnant – over half way through
the two of them were conferring quietly. I      Kings.                                                                                     the last scan – he felt like it would bring
                                                                                              my pregnancy the baby had just started
was still none the wiser, all was fine last

14      Evelina Children’s Heart Organisation                                                                                                                                                                                       Evelina Children’s Heart Organisation        15
        Spring 2010                                                                                                                                                                                                                 Spring 2010
ECHO THOMAS’ STORY                                                                                                                                                                                                                                 ECHO THOMAS’ STORY

                                                                                                                                          cry to relieve any undue pressure on his     Thursday 15th October came; I stopped              was moving about, I thought he would
                                                                                                                                          heart and this made being a first time       breastfeeding at 8am that morning and              remain still but the nurses told me it was
                                                                                                                                          mum even harder.                             found that I couldn’t hold Thomas after            a good sign that he was fighting the
                                                                                                                                                                                       that otherwise he’d be looking for food,           anaesthetic and drugs. Matt and I sat at
                                                                                                                                          When Thomas was 16 weeks old I
                                                                                                                                                                                       poor Daddy had to take charge. The call            his bedside.
                                                                                                                                          noticed his colour just didn’t look right
                                                                                                                                                                                       we wanted but dreaded came and
                                                                                                                                          and he seemed to cry a lot more than                                                            Mr Anderson and Andreas came to see
                                                                                                                                                                                       Katherine the Ward Sister lead us all to
                                                                                                                                          usual. I called the outreach nurses at the                                                      us to let us know that all went very well
                                                                                                                                                                                       theatre at around 1.30pm. I can only
                                                                                                                                          Evelina and told them my concerns.                                                              and that they were pleased with the
                                                                                                                                                                                       describe it as walking the green mile; I
                                                                                                                                          They suggested I take him to our local                                                          outcome. They had managed to save
                                                                                                                                                                                       don’t know how our legs carried us.
                                                                                                                                          A&E to get his oxygen saturations                                                               Thomas’ valve. Words failed me (for
                                                                                                                                                                                       Thomas was jiggling about in Matt’s
                                                                                                                                          measured to be safe. Off Thomas and I                                                           once) and I kissed them both to thank
                                                                                                                                                                                       arms one minute and the next he was
                                                                                                                                          went expecting them to tell me I was an                                                         them for what they had done for Thomas
                                                                                                                                                                                       anaesthetised. It was horrendous; we
                                                                                                                                          over anxious mother. I was horrified                                                            and our family.
                                                                                                                                                                                       were allowed one quick kiss before we
                                                                                                                                          when they measured his sats and they
                                                                                                                                                                                       had to leave. I rushed back for a second           The operation was on the Thursday,
                                                                                                                                          were 50%!! Matt came home from work
                                                                                                                                                                                       and pleaded with the anaesthetist to               Saturday night we moved to HDU on
                                                                                                                                          immediately and we were admitted
                                                                                                                                                                                       look after our little boy – he assured me          Camel ward. The following Thursday,
                                                                                                                                          overnight where Thomas was on oxygen
                                                                                                                                                                                       they would.                                        one week after surgery, we were home
                                                                                                                                          until transfer to the Evelina by ambulance
                                                                                                                                                                                                                                          with our fixed and very pink little boy!
                                                                                                                                          the following morning.                       We left the hospital and met our families
                                                                                                                                                                                                                                          On the day of discharge Dr Miller said to
                                                                                                                                                                                       in reception. We all walked along the
                                                                                                                                          On arrival at the Evelina Thomas’ Echo                                                          us “these babies are made of rubber,
                                                                                                                                                                                       Thames. Matt had planned a route for
                                                                                                                                          showed that his pulmonary artery had                                                            they just bounce straight back!” Thomas
                                                                                                                                                                                       us so we had a purpose and to keep
                                                                                                                                          narrowed further and he was placed on                                                           is proof of this.
                                                                                                                                                                                       ourselves busy. We stopped for a bite to
                                                                                                                                          beta blockers. The Drs hoped that he
                                                                                                                                                                                       eat and after the meal I went to the               As I write this 10 months have passed
                                                                                                                                          could be stabilised and surgery planned
                                                                                                                                                                                       ladies and when I returned I could see             since we first discovered we were having
                                                                                                                                          for later in the year. After a few days
                                                                                                                                                                                       Matt was on his mobile and looked                  a cardiac baby, almost 7 months since
                                                                                                                                          things were looking up and his oxygen
                                                                                                                                                                                       concerned. I rushed back to the table              Thomas’ arrival and 3 months since his
                                                                                                                                          sats were stabilising and we looked like
                                                                                                                                                                                       and he walked away from me still on the            operation. It already feels like an age
                                                                                                                                          we would be going home. We were
                                                                                                                                                                                       phone. I followed him – I knew it was              away.
                                                                                                                                          moved from HDU to the general part of
                                                                                                                                                                                       the Evelina – we purposely hadn’t told
                                                                                                                                          Camel but overnight Thomas had severe                                                           Since surgery Thomas is a different baby,
     ECHO has and continues to be a tremendous support;                                                                                   cyanotic spells where he would go white
                                                                                                                                                                                       friends that Thomas was having his
                                                                                                                                                                                                                                          very content, always smiling and very
     when you first find out about your child’s heart you feel very                                                                                                                    operation so we didn’t receive any texts
                                                                                                                                          and floppy. It was like having a blow up                                                        pink! All the staff at the Evelina take
                                                                                                                                                                                       waiting for updates – I was worried
     lonely but with ECHO you are never alone.                                                                                            baby, one minute he’d be happy and
                                                                                                                                                                                       they’d make us more anxious and the
                                                                                                                                                                                                                                          amazing care of us parents and our little
                                                                                                                                          jiggling about and then he would deflate                                                        ones and as a family we cannot thank
                                                                                                                                                                                       time drag even further. Matt gave me
                                                                                                                                          until oxygen re-inflated him again. It                                                          them enough for what they have done.
                                                                                                                                                                                       the thumbs up and smiled and I relayed
                                                                                                                                          was absolutely terrifying but I was so
We’ve followed each others journeys and          eventually told to get on the train to St   epidural. Matt returned to tell me he had                                                 it to our family back at the table. We             ECHO has and continues to be a
                                                                                                                                          relieved we hadn’t been sent home.
when no other mum can understand                 Thomas’ as although my waters had           my chin (poor thing) and we agreed we                                                     then had a mad dash to get the bill and            tremendous support; when you first find
what you’re feeling or experiencing I            broken I was not in labour as such. Matt    would name him Thomas Matthew.               The next morning Dr Rosenthal came to        get back to the hospital as soon as                out about your child’s heart you feel very
know where to turn.                              had by now returned from London and                                                      see us and asked if we still wanted to go    possible. It was 3 and a half hours since          lonely but with ECHO you are never
                                                                                             At 7.30pm that evening I was finally
                                                 we booked a taxi to begin our hour long                                                  home – of course we didn’t and neither       we’d left Thomas but already he was in             alone. There is always a fellow mum,
We were booked in and informed that I                                                        allowed down to NICU in a wheelchair.
                                                 journey – I wasn’t getting on the train                                                  did the Drs want us to. Surgery would        PICU and stable. This was a lot quicker            dad, brother, sister and grandparent
would be induced at 38 weeks at St                                                           Thomas looked so well. I was allowed to
                                                 with water running everywhere!!                                                          be planned for later that week and back      than anticipated so we weren’t nearby.             there to support you, to empathise and
Thomas’. Despite all the anxiety I was                                                       breastfeed him immediately and the
                                                                                                                                          to HDU we went.                              We ran around the adjacent streets like            to listen. I feel like the privileged
still enjoying my pregnancy and excited          On arrival we were booked in to the         Cardiologist came to tell us he had good
                                                                                                                                                                                       headless chickens looking for taxis and            member of a very special club.
about our impending arrival. I                   antenatal ward. Unfortunately there         news. It’s all been a huge mistake I         On Wednesday that week Mr Anderson
                                                                                                                                                                                       managed to grab two and head back to
understood our baby would be whisked             were no cots available in NICU and so I     thought excitedly. The news was that         and Andreas Hoschtitzky came to see us                                                          The day we found out and the day of
                                                                                                                                                                                       the Evelina.
away to NICU and worse case scenario             remained in my room on a penicillin drip    Thomas was doing really well, wouldn’t       to explain the procedure and the risks                                                          surgery were the worst days of our lives
needing a BT shunt. I was forearmed              for 5 days until a cot became available.    need a BT shunt and could return to my       involved. Since Thomas was under 6           I was elated, I knew that Thomas was a             but having said that I’d go through it all
and forewarned. All that mattered was            Finally I was induced.                      postnatal room, all being well, later that   months and having cyanotic spells he         little fighter and if he could pull through        again tomorrow to have Thomas here
that our baby would be ok. Our feelings                                                      evening. At 11.30pm we were reunited         was in a higher risk category. What          the operation he would get stronger day            with us just as he is today. Nobody can
                                                 28 hours later the baby doctors were
were secondary.                                                                              as a family and 5 days later discharged.     choice did we have – I had to believe        by day. Matt remained naturally                    tell us if Thomas will need a further
                                                 called when our son was born at 2.51pm
                                                                                                                                          that all would be well. I remember Matt      concerned.                                         operation as he grows up and for now I
The baby had another agenda. At 37               on a sunny Tuesday afternoon. Matt          Thomas’ outpatient appointments all
                                                                                                                                          thanking them both and Andreas saying                                                           try my hardest not to think about it.
weeks my waters broke. This was my               cried, I was exhausted but elated. I got    went well and we were told that surgery,                                                  When we arrived at PICU I was so
                                                                                                                                          don’t thank us just yet.
biggest fear that the baby would come            a very quick cuddle before the baby         anticipated for 6-8 months would more                                                     relieved to see Thomas and the fact he             We’re enjoying watching our beautiful
early and be born in a hospital that had         doctors checked our son over and then       than likely be around 12 months. We          Surgery was scheduled for the next           still looked like our little boy that I took all   son grow up and whatever this year has
insufficient facilities for a cardiac baby.      whisked him to NICU with Daddy right        were pleased that he would be able to        morning as an emergency after Mr             the machines and tubes in my stride. I             in store we know for certain 2010 is
My dad drove me to the hospital where I          behind.                                     grow bigger and stronger ahead of            Anderson had performed surgery on an         think having seen photos of other                  going to be a fabulous New Year!
was nervously assessed. It was                                                               surgery but anxious that we had an           adult at Guys Hospital. They didn’t want     children after surgery had helped
                                                 I kept asking the Drs – it was a boy                                                                                                                                                     Joanna Blewett
apparent they were as anxious about                                                          uncorrected heart baby with surgery          to risk Thomas waiting a further day.        prepare me. I think for Matt it was quite
                                                 wasn’t it? I couldn’t go down to NICU
me being there as I was. I was                                                               hanging over us. We didn’t let Thomas                                                     different. I was surprised that Thomas
                                                 until they deemed me fit after my

16       Evelina Children’s Heart Organisation                                                                                                                                                                                       Evelina Children’s Heart Organisation        17
         Spring 2010                                                                                                                                                                                                                 Spring 2010
ECHO MILESTONES                                                                                                                                                                                                                                                         ECHO ETC NEWS

                                                                                                                                                     Teens with a heart condition have a new
                                                                                                                                                               card up their sleeve                                                  CAN YOU HELP?
                                                                                Rosie Wheldal       summer weather, loved the swimming               Living with a heart condition can       and discreet way to demonstrate         Children, young people, PARENTS and clinical
       This article gives you the                                               sent in this        pool and got his feet dirty for the first time   be very difficult for a teenager; for   to others that they suffered from       trials
       opportunity to share your                                                fantastic photo     in his life. (And for those in the know - ate    some, everyday activities can be        an ongoing heart condition.
                                                                                                                                                                                                                                     Hi. My name is Lesley Powell and I’m a researcher at the
       happy events and milestones                                              of her son          lots of biltong to help with his teething...)    difficult or even impossible. On
                                                                                                                                                                                                                                     University of Oxford. I’m looking for young people and
                                                                                Samuel who          Here he is playing pool with his cousin, in      top of this, teenagers sometimes        Any young person between 13
       with all our ECHO members.                                                                                                                                                            and 19 with an ongoing heart            parents to contribute to a new section of
                                                                                turned seven in     the under 14-months league"                      find others questioning their
       Thank you to Pippa, Rosie and                                            September                                                            condition, or making assumptions        condition is eligible for the card,     www.youthhealthtalk.org on taking part in clinical
                                                                                                    Jessica Cattermole                                                                                                               trials. The trial can be of any form or type including
       Lee for sharing your lovely                                                                                                                   about what activities they can          which is valid for two years with a
                                                                                                                                                                                             passport photograph.                    medicines and also other types of treatment or care (such
       news and photos with us.                                                                                                                      and can’t do.
                                                                                                                                                                                                                                     as surgery, vaccination, neonatal care, different types of
                                                                                                                                                     That’s why the British Heart            The BHF Card is part of the BHF’s       diet, physiotherapy, complementary therapies etc). I’m
                                                        Samuel, proud big
       Pippa Duffy sent me this wonderful photo       brother to Sara, Lucie-                                                                        Foundation (BHF) has launched           Meet@teenheart programme for            looking for young people ages 12-20 years and
       of Leo taken shortly after his heart surgery       May and Ollie                                                                              the British Heart Foundation            teenagers living with heart             parents of younger children (age birth to 11 years) to
       in November. Pippa wrote “Here’s Leo                                                                                                          Card, a new “ID card” for teens         conditions. If you’re a young           talk about:
       Duffy ‘flying high’ after his DORV/Fallots &   Lee Swanepoel wanted to                                                                        with a heart condition. Filled out      person with a heart condition,
                                                                                                                                                                                                                                     • Why you decided to take part (or said no!)
       AVSD surgery in early November. Mum            share this happy event                                                                         by a cardiac nurse, cardiologist or     ask your Cardiologist or Outreach
       and Dad, Pippa and Andrew, together with       with us. "The Swanepoel-                                                                       cardiac physiologist and given to       nurse about the BHF Card.               • How you discussed it with your parents, and with
       big sisters Amber & Jasmine are all very       family went to South Africa                                                                    teenagers for free, it can be                                                     doctors or nurses
       proud of their very own little Superman,                                                                                                                                              Please note, ETC has a limited
                                                      in the beginning of January                                                                    shown to others at times when                                                   • What information you were given about the trial –
       who celebrated his first birthday two days                                                                                                                                            supply of these cards available
                                                      2010 to introduce their son                                                                    their condition is questioned or                                                  could you understand it?
       after getting home from hospital”                                                                                                                                                     and would be happy to send you
                                                      Herman to his family that live                                                                 forgotten.
                                                                                                                                                                                             one. However, it is important that      • How it felt being part of a trial, and what you had to
                                                      there. Because of the surgery he
                                                                                                                                                     Teenagers can use the card in           the information contained on it is        do
                                                      needed, we could not take him
                                                                                                                                                     situations where they may need          correct, so we would suggest that
                                                      when he was younger and                                                                                                                                                        • What you think about medical research
                                                                                                                                                     to prove or explain their               once you receive it, it is filled out
                                                      this was the first chance
                                                                                                                                                     condition, for example if they          in collaboration with your              • Could things have been done better? Would you do
                                                      for him to meet his
                                                                                                                                                     need to clarify what types of           Cardiologist or one of the                it again?
                                                      extended family. So at
                                                                                                                                                     physical activity they can and          Outreach team.
                                                      14 months he
                                                      enjoyed                                                                                        can’t do or need time off school
                                                                                                                                                                                             Please contact Jo Wilson on
                                                                                                                                                                                                                                     What’s involved…
                                                                                                                                                     to attend a doctors’ appointment.
                                                      glorious                                                                                                                               director@echo-evelina.org.uk to         I would ask you about your experiences and views in an
                                                                                                                                                     The card can also be used as
                                                                                                                                                                                             request a card. Please make             interview (face-to-face, by telephone or via the internet).
                    Leo Duffy flying high
                                                                                                                                                     additional information in case of
                                                                                                                                                                                             sure you give us your full name         You can also share your experiences through a photo
                                                                                                                                                     an emergency.
                                                                                                         Herman and his cousin Lize                                                          and address!                            diary, poems, drawings or photos. I will then put clips
                                                                                                                                                     The card was developed as a                                                     from your interview on our website: you can choose
                                                                                                                                                                                             For more information, visit             whether we use video, audio or text clips or you can even
                                                                                                                                                     direct response to feedback from
                                                                                                                                                                                             www.bhf.org.uk/bhfcard                  have an actor speak your words if you want to be
                                                                                                                                                     young people with a heart
                                                                                                                                                     condition, who wanted an easy                                                   completely anonymous.

                                               Jack's Evelina's Pride                                                                                                                                                                “They had a trial going on when I first
                                                                                              Activities for young                                                                                                                   started my chemo that looked at giving
                                                                                                                                                                                                                                     it more intensively over a shorter
                                                great fun and I fell over far to many
                                                times but hey maybe next time I might
                                                                                              people at the ECHO                                                                                                                     period. We decided that I would take
                                                managed to stay upright. I also went to       AGM and Family                                                                                                                         part in the trial…Mum was always
                                                                                                                                                                                                                                     making sure she knew exactly what was
                                                the Albert Hall to see Circle du soleil
                                                which was brilliant. I am really pleased
                                                                                              Weekend.                                                                                                                               going on and why they were doing things whereas I was
                                                                                                                                                                                                                                     just too tired to be honest.”
                                                to have joined the Evelina pride as it is
                                                great meeting up with lots of other
                                                                                              Ideas Wanted!!!                                                                                                                        For more information
                                                people and my best heart mate Tom             This will be held on Saturday 12th June 2010
     Hello there.                               Sexton goes. The best thing about                                                                                                                                                    Contact me, Lesley Powell, by phone, text or email. If you
                                                                                              and yet again we're planning some really
                                                Evelina’s pride is you can make new                                                                                                                                                  then decide you don’t want to take part - no problem.
     My name is Jack and I am 13 yrs old.                                                     exciting activities to keep the older children and
                                                friends and have a fun time with              teenagers amused whilst Mums and Dads listen                                                                                           Thanks
     I recently joined a group called           everyone. And we also practice                to all the serious stuff in the Conference Hall. If                                                                                    Tel: 01865 617768/289328
     Evelina’s Pride which is run by Melinda    dancing for fun. And we are also              your family is planning to come along, why don't                                                                                       Text only: 07729 305206
     Edwards and Jemma Day. We meet up          planning on doing even more fun               you tell us the sort of things you'd like to do on                                                                                     Email: lesley.powell@dphpc.ox.ac.uk
     once a month at the Evelina for various    things and seeing more great shows.           the day - Alex and the team are already busy
     activities which have included ice         Jack de Naeyer                                planning activities but would love to hear from
     skating at Somerset House which was                                                      you with your ideas for games, competitions, an
                                                                                              outing (in the City of London area) etc etc.                                         If you are over 11 and haven’t already joined ETC (ECHO Teen Club) then don’t delay, you
        If you are interested in joining the Evelina’s Pride group, please ask your           Please email admin@echo-teen-club.org.uk as                                          might be missing out! Email your name, date of birth, postal address, email address
                Cardiologist or Outreach Nurse about how to be referred.                      soon as you can!                                                                     and mobile phone number to Jessica on admin@echo-teen-club.org.uk!


18          Evelina Children’s Heart Organisation                                                                                                                                                                                               Evelina Children’s Heart Organisation              19
            Spring 2010                                                                                                                                                                                                                         Spring 2010
KEEP IN CONTACT                                               Does ECHO have your email address?
                                                              Send it to Jessica on admin@echo-evelina.org.uk


AREA CONTACTS
  AREA                         NAME                           TELEPHONE                       EMAIL
  North London/Herts           Mandy Webster                  0208 202 0713                   north@echo-evelina.org.uk
                               Diane de Naeyer                020 8441 3644                   north.london.herts@echo-evelina.org.uk
  East London/Essex            Kerry Auger                    01702 559 335                   east.london.essex@echo-evelina.org.uk
  South London                 Eleanor Beardsley              020 8690 6804                   south.london@echo-evelina.org.uk
  Kent                         Fran Wintour                   01322 864 350                   kent@echo-evelina.org.uk
  Sussex                       Jessica Cattermole             07943 625 031                   sussex@echo-evelina.org.uk
                               Rosie Wheldal                  01424 442 816                   east.sussex@echo-evelina.org.uk
  Suffolk                      Teresa Buchanan                01473 659 360                   suffolk@echo-evelina.org.uk
  Surrey                       Beverley Jowsey                01737 246 709                   surrey@echo-evelina.org.uk
  Norfolk                      Molly Crisp                    01362 860 488                   norfolk@echo-evelina.org.uk
  Pre-natal Support            via Admin Office               07943 625 031                   prenatal@echo-evelina.org.uk
  Bereavement Support          Cathie Shipton                 07932 812 931                   cathie@missfoundation.org


THE ECHO COMMITTEE
 NAME                                                TELEPHONE                                EMAIL
 TRUSTEES
 Nick de Naeyer Chair                                01992 534 200 / 07889 570 784            chair@echo-evelina.org.uk
 Joanne Williams Treasurer                           07752 504 021                            treasurer@echo-evelina.org.uk
 Jane Ward Trustee                                   020 8655 0660                            jane@echo-evelina.org.uk
 Grant Taylor Trustee                                07958 69 0184                            grant@echo-evelina.org.uk
 CONSULTANTS
 Jo Wilson Director                                  01932 864 893 / 07921 775 795            director@echo-evelina.org.uk
 Jessica Cattermole Deputy Director                  07943 625 031                            admin@echo-evelina.org.uk
 ECHO TEEN CLUB
 Alex Bicknell Youth Development Volunteer           07712 654 607                            alex@echo-teen-club.org.uk
 MEMBERS
 Barbara Squires                                     01689 829 080                            barbara@echo-evelina.org.uk
 Ben Wilkie                                          07944 849 137                            ben@echo-evelina.org.uk
 Richard Parsons                                     07976 839 303                            richard@echo-evelina.org.uk
 Saleha Kabir                                        020 7701 5917                            sal@echo-evelina.org.uk


 Don’t forget to let us (and the hospital) know of any change in your contact details, i.e. address, phone number, e-mail address

                     Designed by Stanislaus Design Please call Kim on 07949 253 920 or email kim@stanislausdesign.co.uk


ECHO MEMBERSHIP FORM

                                                 Name of Child                                    Child’s Date of Birth
                                                 Parent(s) Name(s)
                                                 Would you like to be put in contact with other families in your local area? Yes   No
 To join ECHO, please complete the form          Address
 and return to Jessica Cattermole at:                                                             Postcode
 ECHO                                            Telephone                                        Email address
 PO Box 5015, Brighton BN50 9JR
                                                 Child’s condition

 Membership of ECHO is free, but if you          Has he/she had surgery? Please give details
 would like to make a donation, however
 small, it would be gratefully received.

								
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