The number five has been floating around in my head this week and for good reason. Nicholas turned five in June this year, today is the 5th day of November and it’s exactly five years ago that he had open-heart surgery. A congenital heart defect is one that affects the structure of the heart and is present at birth. It is the most common birth defect and nearly half of babies born with Down syndrome, are affected. Nicholas was one of them. When your baby finally enters the world, you expect him or her to be examined by a paediatrician. But having a cardiologist perform tests on your baby when they are only forty-eight hours old, is definitely something no parent anticipates.
I remember the morning of Nicholas’s surgery so clearly. Seeing our little four month old boy wheeled into theatre, was a gut-wrenching experience. All you want to do is protect them, but the situation is out of your control. You’re handing over your child and all you can do is wait. My other sons had been under general anaesthetic previously, but a twenty minute grommets’ insertion was a far cry from open heart surgery. And even then, it was very scary letting your child go, if only for a minor operation.
The six hour wait was agonising but we were thankful for the constant SMS updates from the anaesthetist. We never thought we’d be hearing the words ‘bypass’ in conversation regarding our baby, but we trusted that Nicholas was in the best possible hands. He was a fighter and we just had to stay hopeful and positive.
After a wait that felt as if I’d aged ten years, we were informed that the surgery was successful and that Nicholas had been taken to the cardio-thoracic ICU. We had had experience with the neonatal ICU in the past. He spent the first three weeks of his life in there and then another two weeks for RSV, only ten days after finally coming home. But nothing could’ve prepared us for this area of the hospital. The patients ranged from young to old and you knew all were dealing with life-threatening situations. It was a very sombre place to be but the nurse patient ratio was one-to-one, so we were comforted by the fact that Nicholas was receiving first class care.
After hearing that Nicholas was out of surgery, we had to wait awhile before being allowed to visit, as he was heavily sedated. That first glimpse of your baby attached to so many tubes and wires, with a large vertical bandage on his chest, indicating where they had cut him open, was so difficult. All we could do was focus on the positive. They had managed to repair the holes in his heart and we had to believe that ‘time would heal all wounds’. We would keep visiting him, would keep telling him how much we loved him and when he was ready, we would take him home.
One of the nights, waiting to go in and visit him, sticks out clearly in my mind. The alarm suddenly went off and the ICU went into lock down. No one was allowed to go in. It was terrifying, as all the visitors waiting didn’t know for whom the alarm sounded. Someone was in distress and all we could think was, ‘is it Nicholas?’ Thankfully, we didn’t have long to wait for an answer, as his nurse for the night came out and told us that he was absolutely fine. What a relief!
Bringing Nicholas home was such a happy day, but also quite a nerve-wracking one. We were almost too scared to hold him, for fear of hurting the wound. We had some days where he just cried and all we could do was comfort him as best we could. I was petrified of burping him as I’m sure his little chest was in pain. Nicholas will never remember that whole experience and for that we’re very grateful, but it was also amazing to see how resilient and brave he was, despite being so tiny. Day by day his chest started healing and our fear began to subside. He is now just left with a scar from his ordeal and our own hearts can barely contain the love we have for him.
As a parent, you never quite know what you can handle until you are thrust into a situation that involves your child. There is an inner strength in all of us that becomes apparent when someone you love, more than life itself, is under threat. I am so thankful that five years ago, Nicholas’s heart surgery was successful. For now, his heart is healthy and only annual cardiologist check-ups are necessary. Going through such a traumatic ordeal really puts things into perspective and I am deeply saddened to think that there are many families out there who unlike us, never got to bring their little ones home.
“25 to 30 children are born with a congenital heart defect in South Africa every day. 25% of them will need life-saving intervention in the first weeks or months of their lives. Only 40% will receive it” – www.heartkids.co.za