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

Since we published Harry's story the rollercoaster continues to roll in 2009.

Harry had a stent put into his aortic arch in 2007 and this was extended in August 2008. He started on Lisinopril to try and alleviate the pressure of his ventricle caused by the poor functioning of his aortic valve, and we are very happy to say that this is currently working and has avoided the need to have an aortic valve replacement.

Harry has been advised to stop playing football to avoid him over exerting himself, as he would charge around the pitch, but they have let him play Rugby as they only play for 10mins. He plays on the wing for the school A team and has some bruises to prove it!

Harry won the Javelin for his house and year at sports day this year and continues to amaze us!