AVSD and Pulmonary Stenosis: Liam’s Story

When Suzanna was pregnant with Liam, everything seemed fine. But soon after birth, he began showing signs of distress and his heart defects were diagnosed. This is their story, told by Suzanna:

After having my eldest son, Liam who is now three years-old, we had the shock of our lives. We had a normal pregnancy, with no complications, and all his scans seemed absolutely fine.

After a 36 hour labour, Liam arrived and seemed to be doing well. Eight hours after his arrival, he took a turn for the worse and his oxygen levels plummeted. His SATS were in the 80s and, despite being given oxygen, his levels would not increase.

Liam was admitted to NICU, was given antibiotics and was closely monitored. During his regular observations, they picked up a heart murmur, so decided to do a chest scan. That was when they discovered that he had a complete AVSD (atrioventricular septal defect).

We were taken into a side room and told the terrible news. They informed us he would be referred to another hospital and would need open heart surgery at some point.

It was then discovered he also had pulmonary stenosis.

During his first year, Liam managed to thrive, despite having a poorly heart. He underwent his first open heart surgery two days before his first birthday.

Unfortunately things didn’t quite go to plan. When they opened up his chest, they discovered an additional three heart defects. They did one repair and then had to close him up and re-evaluate, looking back through his previous ECHOs to understand why these additional three weren’t picked up.

Liam had a catheter procedure and the surgeons came up with what needed to be done.

Two weeks after his first surgery, Liam had his second. This surgery was far more complex, but those surgeons really knew what they were doing and, after a gruelling wait, Liam was back on the ICU and doing well.

He suffered with a chest infection during recovery, which set him back a little, but he soon bounced back to being his happy, bubbly self. I cannot thank the consultants, surgeons and nurses enough.

Liam has a leak from one of his valves, which couldn’t be helped as his valve wasn’t formed properly, and he takes medication for this. However, he is still thriving and you wouldn’t even think he went through everything he has.

Find out more about different types of congenital heart defects here.