Harry’s Story

August 6, 2012 by  
Filed under blog

In honour of this month’s charity Heartkids NSW (a very special charity), I would like to share a mother’s courageous and heartfelt story about her first born son, which reminds us all how precious life is and to appreciate the joy in every day.

Harry’s Story

Four years ago, I gave birth to my first child Harry. All seemed well and I had a healthy little boy. This all changed when at 10 days old – Harry was diagnosed with Congenital Heart Disease (“CHD”). My beautiful baby had a very large and complex series of holes in his heart – correctly termed a “Doubly committed sub-arterial ventricular septal defect”.

Our world came crashing down– all first time parent happiness and joy evaporated around us. This was not meant to be happening. We were both young, fit and very healthy. Every scan showed our baby developing as normal – even as close as 3 weeks before his arrival.  We were told that Harry needed open heart surgery to survive – a scary thought when to look at he looked so perfect from the outside. And so our heart journey began. As a parent of a very sick child you become an expert in their condition very quickly. In hospital my husband Will and I became experts at silencing beeping machines keeping him alive – reading his charts and stats.

We needed to monitor Harry until he was a bigger size to hopefully survive the operation – 5 kg was the magic marker…we got so close, but at 11 weeks and 4.92 kg, we were told Harry’s heart would not last any longer – the operation had to be now. This operation, though extremely daunting and with its own associated risks, was his best chance of survival. We headed to Westmead for the worst day/week of our lives.  The hardest thing I have ever had to do was hand my sleeping newborn baby over to the doctor in his scrubs with the fear that I may never see my baby alive again.  Our amazing surgeon worked tirelessly on Harry’s walnut size heart for 7 hours. After a few hiccups, we got to see him in PICU. 3 long days later as he started to wake from his induced coma, I got my first cuddle – the best feeling in the world. Luckily, the operation was a success and we hope for Harry to lead a normal life with yearly check-ups at present to monitor the heart through the rapid growth that occurs in these first early years.  Just over a week later, we were sent home with our ‘repaired heart’ baby. As it was explained to us – Harry’s heart will never be normal but it should function as normal and that is all he needs. We are one of the lucky ones, I know too many people that have not been as lucky as us and have not been able to take their baby home and watch grow. It is the most simple and rewarding thing in life – something everyone should be able to experience.

As the cause for CHD is still unknown, the thought of me extending my family has been extremely daunting.  1 in 100 babies are born with CHD in Australia – that is 6 every day. Unfortunately, 6 of these angels die each and every week. The thought of what if it happens again, and this time we are not so lucky is constantly going through my mind.  As there is no known cause and no cure, this is a real concern. Luckily, after many checks and much worry, I gave birth to a healthy baby girl Ava – 2 years ago today!  After living through this ordeal, we have decided to do something for the foundation that helps the many babies like Harry both now and in the future, and to try and find a cause.

You may not be aware of the incidence of CHD (nor was I until Harry was born). This condition was not picked up in any scans, and cannot at present be explained. Until Harry was born, I was unaware of both the number of cases and the severity of CHD. You will be amazed to know that children’s heart disease is the greatest killer of ALL children in Australia, taking more lives than all other diseases combined and twice that of childhood cancers. It affects 1 in every 100 children, which equates to over 6 a day being born with CHD.

As a parent, we always think this won’t happen to us. I am living proof that is does. Life is so short and so precious. Nothing is more important than our children. Your support with this charity warms my humbled heart. xx

Gorgeous Harry now - aged 4!

To show your support and help the foundation find a cause so we can prevent new parents having to go through this ordeal, please submit yours or others acts of kindness here as for every idea, $1 goes to this amazing charity Heartkids NSW. Thank you kindly.