Harry's Story
I had a great pregnancy, everything seemed to be going well and my
checks with the midwife all proceeded to plan. I recall one midwife
telling me that the baby had a strong healthy heart beat – it was
funny how that stuck in my mind after Harry was born.
My waters broke 6 weeks early, which was a bit of a shock, but
nothing else was suspicious. I stayed in hospital that night and
Harry arrived the following morning, weighing 5lb 10oz.
He was taken
to the Special Care Baby Unit as he was premature.
On examination they heard a heart murmur which they attributed to a
Patent Arterial Duct (PDA) which sometimes remains open on premature
babies and normally will shut when they are 4 days old. Harry
seemed to be doing OK, but I can’ t recall much about that time as
it felt like a blur - you just get on with it because you have to.
 At 9 days old they could still hear the murmur and after us pushing
the doctors they agreed to transport Harry to the Cardiac Hospital
by ambulance for an echo. The staff seemed quite convinced that
there was nothing seriously wrong with Harry and he was feeding
through a tube, but was generally quite steady.
We will never forget that day, seeing our little man lying
there, and in fact our future visits to the echo room
bought back all those memories and feelings, and still
does now.
The consultant spent what seemed like forever looking at
the pictures and we started to get that feeling that all
is not well. He told us that Harry was poorly and that
they would need to keep him in and they planned to operate
on Sunday.
At that point the bottom fell out of our world completely. Trying to
deal with the news and what was happening was a surreal experience.
A lot of emotions were experienced in a short time; shock, fear,
anger, denial, hurt.
On Sunday morning Greg carried Harry down to the operating theatre -
something I couldn’t do. Harry’s operation involved the building of
an aortic arch, as he didn’t seem to have one. Then we had to fill
the time, the hours dragged by, it seemed like an eternity. About 6
hours later, waiting in the family room, we heard
footsteps along the corridor and the surgeon who stood in the
corridor and smiled at us. At that point our relief was immense.
 We then took each day, hour, minute as it came. All the time we
could spend was next to Harry. I am not sure how I felt right then:
certainly angry at times - but not sure who with; guilt also crept
in – at myself – what had I done wrong? But also feeling positive.
We had a great deal of support from our friends and family, and for
each other which was critical. When we finally bought Harry home we
then tried hard to settle in to a normal life and bring him up as a
normal baby, he was not on any long term medication or treatment at
home and with the help of our doctors I was encouraged to not wrap
him up in cotton wool too much.
We knew that Harry would need further surgery, which he had aged 4
months which was a repair of a Ventricular Septal Defect (VSD), so
the rollercoaster began again: the trepidation before, the waiting
and waiting during and the recovery. Harry continued to recover
extremely well; he went to a crèche and did all the normal things
that healthy children do.
 We continued to visit the hospital for regular check ups and at 2
1/2 Harry had his third operation for Aortic Stenosis. This is the
first time I can remember becoming aware that there were other
things going on with Harry and things were more complicated that we
first thought or that I had accepted.
His recovery from this op was amazing and certainly he amazed us.
On leaving hospital it was back to our ‘normal’ lives, and we saw
Harry starting school, learning to swim, learning to ride his bike
and play
football. Without knowing Harry, people would have had no idea what he had
already been through in his life.
In 2006 we were told the inevitable that it was time now to replace
Harry’s aortic valve. They hoped to perform a Ross procedure,
replacing his aortic valve with his pulmonary one and putting an
artificial one where his pulmonary valve was. Two weeks before his
op Harry ran at the schools sports day and led his house out as
captain and proceed to sprint his way to first place, no-one
believing me that he was about to have surgery!
 As Harry was 9 he was able to understand what was going to happen
and was so incredibly brave and trusting.
It wasn’t easy for us to try to function as normally as possible for
him - trying to be brave and strong when inside you are hurting;
trying to rationalise and understand what is happening and why;
trying not to think of the what if’s, but at the same time having to
face them …
We got through this, and we know that there is more to come. I am
not sure that the rollercoaster has ever stopped, I guess it has
become part of our lives and we have let it, and we still don’t know
when we need to hold on that little bit tighter and shut our eye’s,
but we do trust those around us.
Amanda, Greg, Harry & Joshua, 2007
Back to the top
 next
story >
Links
>>
|
