After a normal birth, Austin appeared to be perfectly healthy. But when he struggled to feed and didn’t gain weight, his parents knew something wasn’t right. He was eventually diagnosed with VSD (ventricular septal defect). Liam tells their story:
Austin was born a strong 10lb 11ozs after a normal birth with no intervention. During the pregnancy, we had a slight scare with a few anomalies with his bladder on various scans, but nothing about his heart. After a nail biting few weeks, everything thankfully returned to normal. During this time we had extra scans and, due to Austin’s dad having a VSD (ventricular septal defect) as a child, he was actually booked in for a specific heart scan. However, after a second scan to clear up the bladder anomalies, the doctors decided not to bother with the heart scan after all.
During his first few weeks, Austin really struggled to feed and didn’t take more than a few ounces without getting out of breath and tired. We never thought much of it until we went for a weigh-in at the local community centre when he was four weeks old, and the midwives noticed he wasn’t putting on enough weight. We told them about his feeding and they referred us to the GP.
The next day, our GP referred us to paediatrics at the hospital, and paediatrics then referred us to a consultant, who in turn referred us to a cardiologist. By this point we started to realise something wasn’t quite right.
The consultant confirmed he could hear a slight murmur and, given the family history, booked Austin for a scan, which in turn confirmed the VSD. This was at the start of November when he was only one month old. We were told the same as everybody else: holes in the heart are common and it might close by itself, come back at the end of January for another scan, in the meantime look out for various signs such as not feeding, trouble breathing and dehydration.
Throughout November and December we were in and out of hospital. Austin was struggling to breathe and was drinking less and less milk as the days went on. We were given open access as he soon caught bronchiolitis and a respiratory virus. Sometimes we got checked over and sent home, other days we ended up staying in for days at a time.
Eventually Austin started to get dehydrated and, after spending another few days in the local children’s ward on a feeding tube, he was sent to another hospital to be seen by more consultants. Here, they confirmed he was in heart failure. He was prescribed medication and given high calorie milk formula to build up his strength for the open heart surgery he would need.
Hearing the words, “heart failure” was, at the time, the most difficult thing we had to come to terms with. But this was soon eclipsed when, in February 2020, when Austin was just four months old, we got the call to bring him in for his surgery.
Taking him down to theatre and saying goodbye when the anaesthesiologist put him to sleep was, without question, the hardest thing we have ever had to do. The following few hours, spent wandering around the local city centre in a daze, were the longest few hours imaginable.
Thankfully the surgery went perfectly and after a short 24 hours on ICU, and only a further four days on the HDU, Austin went from strength to strength and was able to come home quicker than expected.
He is now the happiest, strongest, liveliest little chatterbox anybody could ever wish to meet. We make a point of talking about his “superhero scar” on an almost daily basis, as we want him to be proud of how he overcame what he went through, even though he’ll never remember it. He’s just starting to understand, and when asked why he has his “superhero scar” he proudly tells anybody who’ll listen, “That’s where they fixed my heart, in here!”
Tiny Tickers are doing such wonderful work. Nothing could have changed the fact Austin had a VSD, but if only we had been given that heart scan and found out about it, then maybe the first four difficult months of Austin’s life could have been very different indeed.
Our Think HEART campaign helps parents recognise the key signs that their baby may have an undiagnosed heart condition. Learn how to Think HEART here.