When Sam was born in 1985, no-one knew about his heart defects until he went into heart failure. His son, Arthur, was born with similar heart defects. Fortunately, these were detected at his 20-week-scan. This is their incredible story:
Living with a congenital heart defect is part of who I am and always will be. Unfortunately, my condition was not diagnosed until I was ten-days-old and went into heart failure. I was rushed to hospital in an ambulance, where I underwent surgery to correct a coarctation of the aorta. I also had a ventricular septal defect (VSD – hole in the heart), which was later repaired when I was three-years-old. Back in 1985, when I was born, heart conditions were not picked up before birth as much. This led to my parents having to live through a nightmare, with no prior knowledge, reassurance or time to prepare for what lay ahead.
I’m now 38 and fit and healthy, with no lasting issues from my rocky start. My wife, Nicola, and I have recently welcomed our second child, Arthur. We already have a healthy almost three-year-old daughter, Edie, who thankfully has no heart conditions.
We were excited to go along to our 12-week-scan for Arthur, as the idea of a sibling for Edie began to feel more like a reality. Shortly into the scan, the sonographer said that there may be an issue with the baby’s heart and wanted to get a second opinion.
Due to excessive leakiness of the valves, we were referred for further scans with a specialist. This was the start of many months of appointments, scans, tests and a time which was both mentally and physically very difficult. The diagnosis we were given was a coarctation of the aorta, along with a VSD (pretty much the same as I was born with) – the leakiness thankfully reduced with time.
Along the way we were told about the Tiny Tickers charity, and we signed up to the Facebook support group for parents. It was very reassuring to read stories from other parents who have been through, or are currently going through, similar situations to us. More recently, we joined the online support group, which was also a big help. It made us grateful to have the knowledge we had about the condition before birth and what we were facing, along with the support. I know my parents would have benefited hugely from a support network like Tiny Tickers back when I was going through surgery as a baby.
Arthur arrived three weeks early, and we had the NICU team in the room when he was delivered, to get him straight on oxygen and get treatment started immediately. Had we not known about Arthur’s diagnoses before birth, this would have been a very scary and stressful experience, but instead it was highly controlled and managed.
A few days later, he was transferred and he had heart surgery at six-days-old. The coarctation turned out to be a hyperplastic arch too, and there was also an atrial septal defect (ASD – hole in the wall that divides the upper chambers of the heart), as well as the VSD. Thankfully the surgeons were able to repair both holes as well as widen the aortic arch – all in one surgery.
Arthur spent a further three weeks in hospital recovering. It took him a little longer to get off the oxygen, but he finally did it. Amazingly he picked up breastfeeding too – at three-weeks-old – and was cleared by the ENT team to leave without a NG (feeding) tube, which was also a relief.
He’s now four-months-old and seems to be doing well. He’s making steady progress and we are beyond grateful for all the help, support and kindness we received from everyone at Tiny Tickers, as well as all the doctors and nurses who cared for Arthur during such a difficult time.
He’ll carry his scar with him, as I have, as a reminder of how lucky we are to have specialists who are able to diagnose and correct congenital heart defects.