Neonatal Unit Newsletter - Edition 9 - Rchfoundation.com.au

11
PATIENT PROFILES
Lucas Clifford
After two attempts, we finally received confirmation
we were having a boy at our 35-week scan, where
it was also discovered that our baby had a blocked
kidney. The doctor assured us it was nothing to
worry about, they would re-assess it when the
baby was two months old and more than likely it
would fix itself.
Tuesday, 9 January came around very fast and just
after 8.00am, Lucas James Jack, was born via caesarean
section. Lucas appeared healthy and we knew his lungs
were working perfectly as he let out a huge scream when
he had his first look at the real world.
The following day, something wasn’t quite right and my
motherly instincts began to take over. Lucas wasn’t
interested in feeding, however the midwives put it down
to the hot weather. There was no air conditioning, so the
rooms were quite hot and apparently babies don’t feed
too well in the heat. Lucas also hadn’t had a bowel
movement except for a few smears, which we thought
was because he was not feeding. He was also vomiting
green; the midwives also put that down to mucus.
All the danger signs were there, however there was one
problem…. nobody realised.
We checked out of hospital on the Thursday, with Lucas
being just over 48 hours old. Brendan and I were really
excited and dying to get him home to see our girls.
Whilst the temperature had cooled, Lucas still
wasn’t feeding.
We had a midwife visit us on the Friday, she thought
Lucas looked a little jaundiced and had lost weight. She
arranged for another midwife, who was present at Lucas’
birth, to visit the following day (Saturday) to decide
whether Lucas might need to go under lights, but in the
mean time it was suggested I feed him every 3 hours
and hopefully the jaundice might disappear.
Feeding him 3 hourly was impossible as Lucas wasn’t
hungry. On Friday night Lucas started vomiting green
more frequently and was gagging quite a bit. As a result I
attempted to syringe drops of milk into his mouth. Nothing
like this had happened when our girls were born, I knew
something was wrong. I couldn’t sleep; I sat up in bed
and watched the clock, watching the minutes tick by.
Every minute that ticked by was another minute Lucas
hadn’t fed. At 4 am I couldn’t take it any longer, Brendan
rang our local hospital and spoke to a midwife who said
this didn’t sound right and to come up straight away.
Dr Nick Theiss was the pediatrician that was on call and
as soon as he saw Lucas they took him and put him in an
incubator. They removed his clothes and inserted a nasal
gastric tube up his nose. We knew Lucas was sick but
never realised how sick he actually was. Brendan asked
Dr Nick to give us the best and worst case scenarios.
They were: Best Case: Bowel Obstruction; Middle Case:
Hirschsprungs Disease; Worst Case: Cystic Fibrosis.
We were then told that he had to be flown to Melbourne
with NETS (Neonatal Emergency Transport Service) as
soon as possible. Dr Nick was straight on the phone
trying to see where he could get Lucas a bed, with the
choices either The Royal Children’s Hospital or Monash
Medical Center. Dr Nick was hoping he could get Lucas
a bed at the Children’s Hospital. He told us his gut
feeling was that Lucas had Hirschsprungs Disease and if
this was confirmed, he would be operated on as soon as
he arrived at the hospital.
Oh my God! We couldn’t believe it! We just sat there in
tears and total shock.
We arrived at the hospital about five minutes after Lucas
and it was a big eye opener. It was a place that I never
wanted to see the inside of and here we were on the 2nd
floor, inside the Neonatal Intensive Care Unit (NICU).
Brendan and I were just numb. Our poor little man was
supposed to be home in his bassinette wrapped in his
bunny rug and here we were. On arrival, the doctors
advised their need to run some preliminary tests in order
to determine Lucas’ condition. Brendan went with the
doctors and surgeon Dr Joe Crameri to find out what it
was that was making our little man so sick, while I sat in
the waiting room. At about 10:30pm the surgeon came
out and told us he believed it was Hirschsprungs Disease,
he also thought it was low down in the bowel and as a
result, a biopsy would be taken the following day (Monday).
The biopsies were performed and the results returned
very quickly - Lucas had Hirschsprungs Disease.
We were then told that Lucas would need to have a bowel
operation, so that he would be able to have bowel
movements. They explained that Hirschsprungs Disease
is when a section of the baby’s bowel has dead nerves
and doesn’t work; in simple terms the poo is unable to
travel straight through to the anus. It stops where the
dead nerve endings start and causes a blockage.
They explained that the lower in the bowel, the more
favourable the operation. If the section of bowel was too
high up, Lucas would have to have a stoma and bag to
rest the bowel and then have further surgery a few
months later. We wouldn’t find out for sure until Lucas
was operated on but they were silently confident that it
was low down in this case. In the mean time, he would
have rectal washouts.
The next day, Lucas was moved to Room 1 where there
were a lot less machines and the majority of babies were
in cots not incubators. It was so much easier to see
Lucas in a cot rather than an incubator. Being in Room 1
meant Lucas’ wash outs began.
We were taught how to wash Lucas out with a catheter
and saline. After watching the nurses perform this twice,
we then had to perform it ourselves every eight hours;
the nurses did it in the early hours of the morning.
This procedure would be done up until the operation and
at this stage Dr Joe Crameri was saying the operation
would be performed anywhere from one month to three
months of age depending on Lucas’ weight gain.
They explained they would rather operate on Lucas
when he was bigger.
When Lucas started feeding he was given small amounts
of 20mls and slowly it was increased to 70mls. There
was a little trouble with getting Lucas to take the breast
milk from a bottle and often nurses would just syringe it
through his nasal tube straight to his stomach.
There was a day there that we thought, "is he going to
make it through" He seemed to be doing so well, he
was drinking from the breast and they had taken him off
the drip but then he went downhill really fast. They took
him off his feeds and put the drip straight back in.
Millions of little bubbles had formed in his stomach.
I found this really hard to handle and they suggested that
we go home and have a rest. I went home to bed and
cried and cried and cried. It seemed to be two steps
forward and one step back. You’d get your hopes up and