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					          june 007




suPeR                                                                    “We	feel	so	lucky	
                                                                         that	Sarah	is	in	
                                                                         the	expert	hands	




sArAh’s
                                                                         of	the	Respiratory	
                                                                         Service	...	our	faith	
                                                                         and	confidence	in	
                                                                         the	Respiratory	


stRuggLe
                                                                         Team	gives	us	
                                                                         strength.”




“T
            he sound of your child gasping for breath is terrifying.   strength, energy and
            Hearing our beloved Sarah struggling for breath sends us   cheerfulness never
            into a panic,” said Gail, Sarah’s mum.                     ceases to inspire her doctors, family and friends.

The Respiratory Service at Sydney Children’s Hospital, Randwick        “We feel so lucky that Sarah is in the expert hands of the
cares for six year old Sarah who suffers from Obliterative             Respiratory Service. Seeing Sarah weak with pneumonia and
Bronchiolitis - a rare and chronic lung disease.                       other life threatening infections while having long hospital stays,
                                                                       make us feel so powerless. But our faith and confidence in
As a baby, Sarah caught a virus and was seriously ill in Intensive
                                                                       the Respiratory Team gives us strength. Their dedication to
Care for three months. As a result, her lungs were scarred
                                                                       improving the quality of her life enables Sarah to have the best
and weakened, leaving her with only 33% of lung function. This
                                                                       possible outcome and be the best that she can be,” said Gail.
very serious condition requires continuous and specialised
management and monitoring. Simple childhood pleasures such             Sarah’s life-long condition is extremely rare and treating her can
as running are very difficult for Sarah and often she finds it hard    be a challenge as there is still a lot more medical research that
to keep up while playing with her friends.                             needs to be done into this type of lung condition. Respiratory
                                                                       Specialist, Associate Professor Adam Jaffe, has recommended
“Although it can be quite debilitating, Sarah is an active, happy
                                                                       that Sarah’s condition be investigated further by using fine
little girl taking her condition in her stride. However, we have had
                                                                       cameras to view her lungs and to ‘wash out’ her lungs whilst she
many hard times; with lots of stressful admissions to hospital
                                                                       is under general anaesthetic to investigate if there are any other
because she catches respiratory infections so easily. Her fragile
                                                                       infections causing her condition to be so acute.
lungs just cannot cope,” said Gail, Sarah’s mum.
                                                                       “With technological advances and new treatments, our
Sarah’s condition is managed by preventative antibiotics to
                                                                       knowledge of Sarah’s condition is increasing. There is a lot more
protect Sarah from infection, as well as steroids to build up her
                                                                       that is possible for her long-term health outcomes. Sarah has
lungs and open the blocked lung airways. Regular physiotherapy
                                                                       a long road ahead of her but with her fighting spirit and happy
to shift the mucus in her lungs is also part of her preventative
                                                                       outlook, nothing is going to get her down or hold her back. I am
care. Sarah carries an oxygen machine with her wherever
                                                                       proud to be her doctor,” said Associate Professor Jaffe.
she goes, sometimes needing to use oxygen 24 hours a
day. Yet, despite her limited lung function Sarah’s remarkable
                                                                                                                   JUNE 2007 SCH NewSletter   
L        FROM
  ETTER TE
   LE S WHI                                           Dear Friends an
                                                                              d Supporters,
                                                                         is Newsletter
                                                                                             concerns dise
                                                                                                              ases of the
                                                      The theme of
                                                                      th                                        a body system
                                                                                             childhood. It is
                                                                       iratory tract in                                 some
                                                      lungs and resp                                 ildren will have
                                                                         identif  y with as all ch                      infections.
                                                       all parents can                              e form of minor
                                                                          ss,  most likely in th                               rsist
                                                       respiratory illne                                    ren and may pe
                                                                       s up to one       fifth of all child                    is the
                                                        Asthma affect                                        Cystic Fibrosis
                                                                        inuing care      and treatment.
                                                        requiring cont                                                   stralian
                                                                                                      ndition in the Au
                                                                           serio  us inherited co                     continuing
                                                        most common                               is dedicated to
                                                                           ou  r expert team
                                                         population and                               disease.
                                                                                tcomes for that
                                                         impr  ovement in ou
                                                                                                                        uency
                                                                                                        e relative freq
                                                                           knowle    dgement of th
                                                          Beyond the ac                                                ewsletter
                                                                                                     verities, this N
                                                                           cond   itions of all se                              hiolitis.
                                                           of respiratory                                     iterative Bronc
                                                                            re lung dise     ase called Obl
                                               hite        describes a ra                                       families and
                               Isaiah and Les W            Conditions  such as these
                                                                                             challenge both
                                                                                                                            team of
                                                                                                           ly specialised
                                                                             It is cr itical that a high
                                                            professionals.                                              ch as Sydney
                                                                                                     emic setting su
                                                                             e  care in an acad                                   stage.
                                                            experts provid                                      e international
                                                                             pital, well co    nnected on th
                                                            Children’s Hos                                       nce of the team
                                                                                               sional experie
                                                             While the co  mbined profes                                    formation
                                                                                                          city to share in
                                                                                       care, the capa
                                         t		                                   st of                                     ld promotes
                    “	It	is	critical	tha
                                                             ensures the be                            around the wor
                                                                               ith  other experts
                                                              and network w                       ntinuing resear
                                                                                                                     ch of the
                                           sed	                               tanding and co
                       a	highly	speciali                      better unders
                                                              condition.
                                                                                                                s in childhood
                       team	of	experts	
                                                                                                 rare condition
                                                                             th   ere are many
                                                              Paradoxically,                                   ncentration of
                                                                                               . For them, co
                                                                             e of specialties                          rther
                                                              across a rang
                        provide	care		
                                                                                                        th care and fu
                                                                                  dress aspects of bo
                                                              resources to ad                          le outcomes. Yo
                                                                                                                         ur
                                                                                      the best possib                       s where
                        in	an	academic	
                                                                                ides
                                                               research, prov                                such instance
                                                                                 important, particularly in
                                                               contribution is                  ity base for ad
                                                                                                                vocacy
                                                                               isting commun
                          setting	such	as	                      there is no ex
                                                                and support.
                                           ’s	
                          Sydney	Children                        Thank you and
                                                                               best wishes,
                                                                                                  Director
                                                                                  hite, Executive
                                                                   ofessor Les W
                           Hospital.”	
                                                                 Pr
                                                                                n’s Hospital
                                                                 Sydney Childre




   JUNE 2007 SCH NewSletter
joNatHoN’s
       jOuRNeY
   “	We	were	so	lucky.	Jonny’s	side	effects		
     from	surgery	are	minimal	and	now,		
     two	years	later	he	is	doing	his	School	
     Certificate	and	putting	it	all	behind	him,	
     	all	thanks	to	the	amazing	care	he	received		
     at	Sydney	Children’s	Hospital.”                                                                   Jonathon 13 years
                                                                                                        during treatment




J
     onathon’s parents Janet and Peter grew concerned         “We were prepared for a long hospital stay and a tough battle
     about their 12 year old son when his thoughtful          after the surgery as we knew Jonny would have to undergo
     personality became uncharacteristically bad              radiotherapy and chemotherapy to eliminate the rest of the
tempered, one eye started closing involuntarily, his          cancer that was not removed during surgery,” she said.
walk was unbalanced and he was complaining of double
                                                              Two weeks after the surgery, Jonathon began a month of
vision. They knew that these symptoms weren’t just
                                                              intensive radiotherapy on his brain and his spine. He lost his
‘growing pains’ and took Jonathon to their local doctor
                                                              hair, couldn’t eat and missed his friends from home. Following
for a series of tests.
                                                              the radiotherapy, he bravely endured four more months of
A MRI scan revealed their worst fears. Jonathon had a         intense chemotherapy at Sydney Children’s Hospital.
medulloblastoma, a large tumour on his brain stem. The next
                                                              “We took every day one step and a time, but we had our share
day the shocked family were on a plane from their home in
                                                              of dark days. We kept hoping that the treatment would work,”
Coffs Harbour to the Neuro-Oncology specialists at Sydney
                                                              said Janet.
Children’s Hospital, Randwick. The life threatening tumour
needed to be surgically removed as soon as possible.          One long year after diagnosis, Jonathon was given the all clear
                                                              and his overjoyed family took him home.
“Jonny was incredibly brave and recovered well from his
nine hour operation which removed 70% of the tumour,” said    “We were so lucky. Jonny’s side effects from surgery are
Jonathon’s mum, Janet.                                        minimal and now, two years later, he is doing his School
                                                              Certificate and putting it all behind him, all thanks to the
                                                              amazing care he received at Sydney Children’s Hospital,”
                                                              said Janet.




                                                                                                        JUNE 2007 SCH NewSletter   
?fEvERs
     D        id y ou kn ow...
            What	is	a	fever?
             A child’s norm
                             al body tempe
                                              rature is betwee
                                                                               When	do	you	ne
                                                                               You need to se
                                                                               a fever and:

                                                                              • Does not se
                                                                              • Under 6 m
                                                                                                  ed	to	see	a	docto
                                                                                             e a doctor if your ch


                                                                                             ttle within 48
                                                                                           onths - all ch
                                                                                                             hours
                                                                                                                   r?
                                                                                                                  ild




                                                                                                          ildren under
                                                                                                                        has




           and 37.5 ºC. A                                        n 36 ºC.       with a fever                            6 months
                              child has a feve                                               should be ur
           temperature is                       r when their bo                                             gently assess
                             higher than 38                       dy’s         by a doctor                               ed
          hot, flushed fa                      ºC. They often
                            ce and their ha                      have a       • Your child
                                             nds and feet m                                seems very si
          cold, even whe                                      ay feel                                    ck
                            n the rest of th                                  • Has an eara
         with fevers ofte                    eir body is hot.                                che
                            n feel miserab                      Children
                                            le or tired.                     • Has difficu
                                                                                          lty swallowin
         The most com                                                                                  g
                          mon cause of                                       • Has fast bre
        colds and flu.                    fevers is infect                                  athing
                         These infectio                     ion from
                                         ns are caused                      • Has a rash
        and get better                                    by a virus
                          on their own w
                                          ithout antibiotic                 • Has vomitin
                                                             s.                           g
       Some infections
                          , such as ear an                               • Has neck st
       be caused by ba                      d throat infectio                          iffness
                          cteria and your                     ns, may
                                           child may get be              • Has bulgin
       much quicker if                                         tter                   g of the fonta
                         antibiotics are                                                            nelle (the soft
                                         prescribed by                     on the head                              spot
                                                         a doctor.                      in babies)
      What	you	can	d                                                    • Is very slee
                       o	to	manage		                                                  py or drowsy
      your	child’s	feve                                                 • If you have
                       r?                                                             any other co
                                                                                                   ncerns
       When fevers ra
                       pidly increase
      it may occasion                  in children unde
                        ally bring abou                  r five,
     (fits). These ar                   t Febrile Convu
                     e not dangerou                      lsions
    term complicat                     s and have no
                      ions however,                    long
    frightening for                   they are alway
                     parents to wat                   s very
   having a fit, tu                  ch. If your child
                    rn them on thei                    is
   for an ambula                     r side and call
                   nce.                              000

  You	can	help	bri
                  ng	your	child’s	t
  down	by:                         emperature	
  • Taking som
                  e of your child
                                    ’s clothes off
  • Giving your                                      .
                  child medica
    e.g. Panadol or               tions to reduc
                                                    e fever,
                     Nurofen, given
    Ask your chem                     at the correct
                   ist or doctor fo                    dose.
                                    r the correct do
 • Giving your                                         se.
                 child plenty to
   fevers need m                   drink: childre
                  ore fluids.                       n with
• Consulting
               a doctor with
                              in 24-48 hours
  does not settle                               if the fever
                  or your child is
                                    still sick.




                                                                                                                   JUNE 2007 SCH NewSletter   
MaTthEw mAkEs HiS
pAreNTs PrOUd
I
   n December 2006, Angela watched in horror as                    she is a confirmed match for the kidney transplant. However,
   the colour drained from the cheeks of her usually               much preparatory work must be done before a transplant can
   energetic and smiling nine-month-old son, Matthew.              be scheduled.
He was extremely dehydrated and was fast becoming
                                                                   “Matthew now has a chance for a brighter future, and it’s all
dangerously ill. Alarmed by this change, Angela took
                                                                   thanks to Sydney Children’s Hospital. I feel like we have our
Matthew to a local Hospital in Goulburn before being
                                                                   gorgeous little boy back and it’s wonderful to see his bubbly
referred to Emergency at Sydney Children’s Hospital,
                                                                   personality shining through,” said Angela.
Randwick for specialist care.

Matthew arrived with rising levels of creatinine in his blood,
indicating kidney failure and was immediately examined by the
renal team and placed on dialysis and medication to manage
his symptoms.

Matthew was diagnosed with a rare form of nephrotic
syndrome, a life-threatening kidney disease where symptoms
include protein in the urine and kidney failure.

The renal team advised Matthew’s worried parents, Angela and
Allan, that their darling son was seriously ill. The specialists
had never seen such a rare and aggressive form of nephrotic
syndrome in a child so young.

“We were starting to panic. We were feeling very overwhelmed
and frightened by how serious the situation was becoming,”
said Angela.

Over the next two months, under specialist care on dialysis in
Sydney Children’s Hospital, Matthew stabilised.

“The Hospital became our second home. Being far from
home could have been so heartbreaking but everyone on
the ward was so caring and supportive. During treatment
Matthew was confined to his cot for 20 hours a day on
dialysis. Thanks to the wonderful specialists and the
outstanding care he received, he’s much better now and
feeling a lot happier,” said Angela.                                “	The	Hospital	became	our	
Although he’s still under the watchful eye of his doctors             second	home.	Being	far	from	home	
and visits the Hospital regularly for monitoring, Allan and
                                                                      could	have	been	so	heartbreaking	
Angela are thrilled that Matthew is now home where he is on
dialysis every night in preparation for a kidney transplant. It       but	everyone	on	the	ward	was	so	
is expected that Angela will donate her kidney to Matthew as          caring	and	supportive.”
   JUNE 2007 SCH NewSletter
L
     ast newsletter featured 19 month old Sam and his brave fight with
     Haemolytic Ureamic Syndrome (HUS), a rare but potentially fatal
     condition where a germ in the blood stream caused his kidneys
to shut down.
               THEY NOW
                                             ?                                                           Sam 19 months
                                                                                                                                                     Sam
                                                                                                                                                              2 yea
                                                                                                                                                                         rs




Sam spent four heart-wrenching nights connected to a haemodialysis machine
in Intensive Care receiving life saving treatment. Thankfully, once his kidneys had
rested from the effects of the germ they began to work normally and after three

                                                                                                                                                                        u
                                                                                                                                                                hank yo
weeks in the Hospital, Sam’s delighted family were able to take him home.

He continues to have monthly checkups but doctors are happy with his progress and                                                                             t
confident that he will make a full recovery.
                                                                                                                                                 •   Brandswell®
“He is eating, drinking and full of energy. We have our little boy back!” said Mangilla,                                                        •    Gizmo the Clown
Sam’s mum.                                                                                                                                      •    Joanne Moore
                                                                                                                                                •    Mailroom Express
“The fear and sadness we felt when Sam was so sick, is now replaced with relief
                                                                                                                                                •    Oxford Printing
and joy. We are so grateful to Sydney Children’s Hospital for all they have done for
                                                                                                                                                •    Pan TV
Sam,” said Mangilla.




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