Families of Ocean Ward

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Noah’s Story

We found ourselves on Ocean Ward when our son Noah was born on 23 October 2016. We found out at our 20 week scan that our first child had some significant and serious heart defects which meant he would need to undergo open heart surgery within days of his birth and a second operation would be necessary at between 6-12 months. Although, we did our best to prepare for what lay ahead, it was something in hindsight we really couldn’t have ever prepared ourselves for. Noah ended up being on ocean ward for the majority of his first six months of his life. Although the first operation to repair his aorta was successful, we had terrible feeding problems and poor weight gain which meant Noah had to be tube fed round the clock and was unable to leave ocean ward. Because he still had an unbalanced AVSD which needed to be repaired, weight gain was crucial as we needed to get his weight up before the next operation and before he went into heart failure. There were so many trials and tribulations along the way and the road was long and hard. When we did manage to get him home at 3 months old, 10 days later we were back in picu (paediatric intensive care) because Noah had contracted pneumonia. Noah also ended up needing a permanent feeding tube placed directly into his tummy as as he got older he kept pulling the nasal tube out. So, we actually under went three operations in those early months.

Although the journey was incredibly hard, I cannot fault the care we received on ocean ward. The nurses are amazing, and they are there not only to nurse are critically ill children, they are also there when you need a shoulder to cry on or even to just hug your baby, when you need a break from the hospital environment. I have to credit the whole team as well, the cardiac liaison nurses, the registrars and consultants, the dieticians and of course our incredible surgeon Mr Kaarne who has saved our babies life twice now! They make the experience, the best it can be and really look out for not only our children, but us as parents too.

I am pleased to say that Noah has been at home, since his second open heart surgery which was successfully completed when he was 6 months old. And he no longer uses his feeding tube as he now 100% oral for eating and drinking. He is now 18 months and is reaching all his milestones, Infact he doesn’t stay still for a minute now! He will need further surgeries as he grows but we are hopeful that may be some years away. Although, as any parent of a heart warrior will know you never take a single day for granted. We are just so grateful, he is healthy and strong at the moment and we owe his life to everyone on ocean ward and PICU. Ocean ward is a great community and I know that when we return in the future we will be well cared for and be surrounded by friendly faces and receive the very best in cardiac care for our son.

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