Tyler

Tyler’s ‘HeartKids’ story began before he was even born. A routine ultrasound at 19 weeks revealed something was wrong with his heart, and further investigation led to a diagnosis of critical aortic stenosis. As a result, his mother Jennifer had in utero surgery when she was 24 weeks pregnant.

While the surgery to widen or ‘balloon’ his aortic valve was successful, the procedure also revealed other serious complications with his growing heart. Thirty weeks into the pregnancy, Tyler was diagnosed with hypoplastic left heart syndrome (HLHS), which meant his left ventricle was severely underdeveloped and not functioning. To save his life, a series of surgeries would be needed to rebuild his heart. All this and he hadn’t even been born yet.

‘Tyler was born on 1 June 2016 and had his first open-heart surgery when he was 16 hours old. He had to be resuscitated in the delivery room and was diagnosed with full HLHS, an atrial septal defect (a hole in the wall between the two upper chambers of the heart) and aortic stenosis,’ Jennifer said.

‘The night after his surgery was scary and he didn’t do so well, but he came through it and recovered beautifully, waking up when he was six days old. I had my second hold of him the next day.

‘We had a bit of a setback at three weeks and two days when he developed an infection and fluid on his lungs, but he again fought through it.

‘He had his second open-heart surgery, called a Bidirectional Glenn shunt, at four months (and four days) to widen his pulmonary artery and reroute the circulation of blood through his heart.

‘Tyler was finally discharged home on 15 October, 11 days after the surgery (and four and a half months in hospital in total) and he has been thriving at home ever since.

‘We’ve had no major complications and he’s hitting every milestone on time and doing fantastic.

‘He’s now happy and healthy (he’s eight and a half months old and weighs 9.4kg), and if he stays this way, we won’t need his next surgery (a fontan procedure) until he is four to five years old.

‘I am so proud of Tyler and the obstacles he has overcome so far in his short life. He’s a little fighter and doesn’t let his heart condition stop him from doing what he wants. He’s a champion.’