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ECHO Newsletter V flu jitters
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, email@example.com. 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 firstname.lastname@example.org 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 email@example.com 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. firstname.lastname@example.org. 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 email@example.com 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 (firstname.lastname@example.org) 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 email@example.com. 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 – firstname.lastname@example.org! 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 email@example.com firstname.lastname@example.org 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 email@example.com. again. Gradually more and more tubes, lines E-mail: firstname.lastname@example.org 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 email@example.com. 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 firstname.lastname@example.org 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: email@example.com 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 firstname.lastname@example.org 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 email@example.com! 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 firstname.lastname@example.org AREA CONTACTS AREA NAME TELEPHONE EMAIL North London/Herts Mandy Webster 0208 202 0713 email@example.com Diane de Naeyer 020 8441 3644 firstname.lastname@example.org East London/Essex Kerry Auger 01702 559 335 email@example.com South London Eleanor Beardsley 020 8690 6804 firstname.lastname@example.org Kent Fran Wintour 01322 864 350 email@example.com Sussex Jessica Cattermole 07943 625 031 firstname.lastname@example.org Rosie Wheldal 01424 442 816 email@example.com Suffolk Teresa Buchanan 01473 659 360 firstname.lastname@example.org Surrey Beverley Jowsey 01737 246 709 email@example.com Norfolk Molly Crisp 01362 860 488 firstname.lastname@example.org Pre-natal Support via Admin Office 07943 625 031 email@example.com Bereavement Support Cathie Shipton 07932 812 931 firstname.lastname@example.org THE ECHO COMMITTEE NAME TELEPHONE EMAIL TRUSTEES Nick de Naeyer Chair 01992 534 200 / 07889 570 784 email@example.com Joanne Williams Treasurer 07752 504 021 firstname.lastname@example.org Jane Ward Trustee 020 8655 0660 email@example.com Grant Taylor Trustee 07958 69 0184 firstname.lastname@example.org CONSULTANTS Jo Wilson Director 01932 864 893 / 07921 775 795 email@example.com Jessica Cattermole Deputy Director 07943 625 031 firstname.lastname@example.org ECHO TEEN CLUB Alex Bicknell Youth Development Volunteer 07712 654 607 email@example.com MEMBERS Barbara Squires 01689 829 080 firstname.lastname@example.org Ben Wilkie 07944 849 137 email@example.com Richard Parsons 07976 839 303 firstname.lastname@example.org Saleha Kabir 020 7701 5917 email@example.com 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 firstname.lastname@example.org 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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