 |
CHAYCE PATRICK NEWTON
BORN - 28/7/08
|
 |
My family is very familiar with childhood heart disease
as my father and myself both suffered from a heart
condition. I always had a feeling it would show up in my
children. When our first was born he was given the all
clear by the doctors at Gold Coast hospital. I then
thought ok it wont happen.
My second pregnancy was going well. My baby had a
slightly dilated renal pelvis but I was assured things
would be fine. The heart was looked at very carefully
and also given the all clear. So again we thought things
were going to be fine. Chayce Patrick Newton arrived on
the 28/7/08 by c- section weighing 4.190kg and all was
well. During my stay at Lismore Base I started to feel
that something was not right with him. He was a pale
colour and did not feed very well so I had the doctors
look at him twice and both times he was given the all
clear. From then on things just seem to spiral out of
control.
Chayce Just didn't want to feed and was only putting on
about 80g a week and losing it again. I went to my
health nurse and said something is wrong with my baby.
They looked at me and said, ”he is fine what are you
worried about. Children grow in different ways”. So I
went home time and time again.
By six weeks I was on the verge of depression. My mother
said I think it is his heart. The nurse said don't be
stupid, “He is not blue”. I had enough so I went to my
local GP whom had me as a baby. He took one look at him
and said, “Failure to thrive, open his chest”. he found
a very significant murmur which he does not know how the
doctors in Lismore missed it.
I went from there to a pediatrician whom diagnosed him
to be in congestive heart failure which he felt is
coming from a moderate VSD and Patent Ductus Arteriosis
he put him straight on Lasix and Spirolactone 2 times
daily. We had an answer so I thought ok get the fluid
off things will be ok. In Brisbane we met Dr Jim
Moorwood whom confirmed Dr Lennon's suspicion.
Things just got no better even worse. So I went back to
Dr Perry, (GP). He diagnosed still in congestive heart
failure as he was now nearly 8 weeks and had not even
put on 400g. I was sent straight to the Base hospital
where we were hospitalised. He had an NG inserted for
top ups after breastfeeding. I tried a bottle with
expressed milk and fortifier. We were in a week and he
put on 140g so they ripped out the tube and said he is
fine go home.
 |
Over the next week things just got worse he was
a pale pastey colour and had not put on a gram
even with fortifier. My partner and I went
straight back to emergency in Lismore. he was
looked at by a registrar DR. He said he was fine
and that the answer is bottle feeding. He is no
where near dehydration, saying this after he had
not had a drink all day. He also said no NG as
it is the lazy way. So home we went after
feeling stupid and paranoid. For the next few
days my partner, mother and I tried everything
to get some milk into this little boy but he
would probably have 25 to 50 mls or just refuse
it. He again did not put on a gram. So I decided
stop expressing and go straight onto formula and
still no luck. Chayce just seemed to be getting
worse. I went back to Perry whom in which said
off to Brisbane. We were in Brisbane the next
day and the decision was made to close his
ductus in about three weeks. From there I was
transferred back to Lismore base where I was to
stay and try and get weight on him. The Dr whom
sent us home looked in surprise and in his eyes
you could see the guilt building. So the tube
got inserted and I was told to get my milk back
for Chayce. Over the next week he put on a
little weight but his breathing went down hill.
We were under Dr Lennon only now as I lost all
my faith and trust in all other Dr's at the
hospital. |
Chayce began to vomit and could no longer handle the
volume through the pump so Dr Lennon moved his tube to a
TP which sits in the bowel. He then began on oxygen.
Staff at the base thought he aspirated fluid into his
lungs and that is why he was having trouble breathing.
After all this Dr Lennon turned and said I think it is
time to send him to Brisbane we can not do no more for
him here.
We flew out the on the Sunday with the Mater retrieval
team whom in which were fantastic. The cardiologist in
Brisbane that saw us was suspicious and thought he did
not aspirate, that Chayce was in heart failure quit bad.
So he put him on a bolus drip of lasix over half an
hour. This made all the difference. Chayce came off
oxygen the next morning and also off his heart monitor
as well. So things were all a go for surgery. Chayce was
operated on the following Thursday and everything went
good from there. He seemed to recover well. We left the
Mater the following Friday with the tube in but back to
a NG and beginning to feed back on the breast again.
From when he was 7 weeks to 13 and a half weeks I lived
in hospital with Chayce. He was operated on at 12 and
half weeks. He is now 6 months old and the tube has only
just came out. Chayce doesn't drink very well but loves
his solids.
Through my journey I have found that parent instincts
are always right, and that I have lost a lot of respect
for certain medical professionals. A big thank you to Dr
Perry, (GP) for believing me and sending us off on the
right track. Also to Dr Lennon, (Pediatrician) for being
so thorough and supportive through our journey. To Dr
Moorwood, (cardiologist) for also being fantastic and
extremely supportive. To all the staff at the Mater. You
are all fantastic and last off all to our family
especially my mother who was my rock through it all.
We still have monthly checks with Dr Lennon and now
just gone four monthly to Brisbane as VSD is looking
smaller. If any other family feels they need someone to
talk to feel free to email me on-
tajo06@hotmail.com
Thank you
Courtney
 |
