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The journey of Max as told by his parents – Anna and
Michael Gleeson.
The Mighty Max Man.
That is what our only child is known as amongst our
family and friends. And mighty he is! After a relatively
normal pregnancy and after 20 odd hours of labor and a
little help our baby was born……… he was doing it a
little tough at first with a blue tinge to him requiring
some oxygen to give him a little kick start to life.
Being extremely proud first parents, we thought that
that would be all the worries we would have to contend
with – after all Anna ate and drank all the right
ingredients and did everything that the books told her a
pregnant lady should do. Little did we know what was to
follow.
After the initial shock of Max needing oxygen, we had a
relatively uneventful stay at the hospital – all the
tests were in the “normal range” and life was going
along swimmingly. There was a small issue brought up
just before we were to be discharged, when Max’s
pediatrician Dr Easterbrook mentioned that Max had a
murmur on his heart. He told us not to worry too much
and it was quite common, and we should come back in a
week just to be sure. With that in mind we took our
little pride and joy home to show off to friends and
family.
Once we were home Max didn’t really settle into his new
home that well. He was taking a long time to feed and
always seemed hungry, he was losing weight, sleeping a
lot, sweating and looking a bit grey. Being first time
parents we thought that this was just normal for a new
born. What we didn’t know was that these are all
symptoms of Congenital Heart Disease.
One week passed and we were on our way to the
Pediatrician for Max’s follow up appointment. We both
had no idea what we were in for that day! The doctor
took one listen to Max’s chest and admitted him into
hospital. We walked down the corridor of the Mater
Children’s Private Hospital in a daze – not quite
believing that we were there for a sick baby. We spent
the afternoon feeding our son and waiting for the
cardiologist to arrive to ultrasound our son’s heart.
Deep down we knew that something wasn’t right with our
Max – but our own hearts and heads just didn’t want to
think of that possibility. The world as we had known it
was about to change dramatically.
After a long ultra sound and the doctors talking doctor
language , Dr Gooii confirmed that our son’s little
murmur was actually a little bit more serious – actually
a hell of a lot more serious. He had two holes in his
heart - an Atrial and a Ventricular Septal defect (ASD &VSD).
The prognosis was that Max’s tiny little heart would
require surgery as soon as possible if he was to live
beyond 3 months.
There is nothing in the world that could have prepared
us for that conversation. So many emotions racing
through our heads – shock, hysteria and then anger –
how could they not have picked this up earlier –
followed by guilt – what have we done to our poor
little boy – then finally terror!
About now our little Max started getting MIGHTY. We
learnt that we needed to get him to 5kg as soon as
possible so that he could have open heart surgery to
repair the holes. The only drama there was that he used
too much energy trying to breast feed and kept falling
asleep which meant he was losing weight and therefore
“failing” as the Doctors described him. Every time we
heard them say our son was “failing” anger took hold of
us - after all who was anyone to say our son was
failing?! Our little family was doing everything we
could to prepare our son for the fight of his life…..we
were not failing. But failing to thrive – that Max was.
His little heart quite simply was not getting the blood
supply it needed because of those holes.
So, much to Max’s displeasure, the nurse placed the
nasal gastric tube down his nose and gave us some
instructions and we went home to fatten our boy up.
For the next long terrifying 5 weeks we kept feeding Max
every 3 hours through his tube (when he hadn’t ripped it
out) and reported for weigh-ins twice a week as
directed. Our little family unit really built a bubble
around ourselves. We didn’t want to deal with too much
sympathy – we were totally focused and determined to
give our son the best chance possible of surviving his
inevitable surgery.
In late March we finally hit the jackpot – that is, Max
hit 5kg! It was bitter-sweet. March 26 2008 would be
the day of Max’s surgery at Prince Charles Hospital.
We signed the consent letter and handed over our 6 week
old, 5kg beautiful boy to the nurses with a kiss that
we prayed wouldn’t be our last. This, we hope, will be
the most difficult, heart breaking thing that we will
ever have to do in our lifetime. Six hours of twiddling
thumbs and coffee drinking followed - trying to keep our
minds off the fact that our son was being kept alive by
a machine, while Dr Clarke patched up his little heart.
During these long hours we spoke to many people in the
Heart Kids ward – other families – some with older
children in hospital for more surgery, some with babies
who had never been home yet and were still not gaining
weight after surgery and we also were able to talk to a
HeartKids Family Support Coordinator, Sylvia, who
understood the challenges we were facing as she too had
had a heart kid of her own. She listened as we boasted
about our son’s beauty and weight – we were so proud!
The call finally came and we raced back to see our boy.
He had 18 tubes in him and a myriad of machines keeping
him alive. But Mighty he was and with each passing day
he got stronger and stronger and stronger – from
intensive care to high dependency unit to our hospital
room back to his own room at home. We were so proud of
our little Mighty Max and of the work that Dr Clarke and
all his nurses did to keep our man alive and to grow
like he is today. We were and are very fortunate.
Our little Mighty Max man had his first birthday party
on Sunday and he took his first steps just to show how
mighty he is – all 12kg of him! We will never forget
those early weeks and months in his life. His ‘zipper’
is a sign of his tenacity and determination – a true
little champ who will live a long and healthy life
thanks to early diagnosis and wonderful care. We are
truly blessed.
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