Transposition of the Great Arteries: Leo’s Story

Leo’s heart defects were diagnosed at mum, Amanda’s, 20 week scan. Here she shares their story:

Going to our 20 week scan, we were so excited to see our baby boy again, we didn’t even think anything could be wrong!

The sonographer kept making me move positions until she eventually said, “I’ll come back to the heart at the end.”

When she did check the heart, the sonographer then said, “I’m just going to get a second opinion”.

At this point I knew something was wrong. The other sonographer confirmed this. The baby’s valves looked as though they were the wrong way round.

We were taken to a quiet room and when the sonographer came back, she gave us information about Tiny Tickers and told us to avoid Google… which was hard!

We had to wait five days until we could see the cardiac consultant. He checked our baby’s heart and confirmed he had Transposition of the Great Arteries (TGA). He also explained our baby had a good sized hole in his heart (VSD) and this would allow the blood to mix.

The consultant explained that baby would need surgery within the first couple of weeks of life (possibly the switch) and this was hard to take in. We were warned things could change because one of the baby’s arteries was narrowed slightly, so he may need a staged operation.

We were given a follow up appointment at 32 weeks, which showed that the baby’s artery had narrowed more. We would find out more when he was born.

There was so much information to take in at both appointments. My sister came to the appointments with us, and she was such a big support. She was able to explain it all again to us.

I gave birth at 39 weeks, by emergency section. Leo’s dad managed to get a quick cuddle before he was taken straight to NICU, and put on the life saving medication, prostaglandin, to keep his duct open and allow blood flow until his operation was planned.

We had to go to Alder Hey PICU the next day, and Leo did amazingly well. He was taken off the ventilator and to the amazing ward 1C within a couple of days while we waited for a surgery date and a plan.

Thorough CT scans and Echos showed that the switch wouldn’t be an option at this stage, as Leo had TGA with pulmonary atresia and a VSD.

At nine days old, Leo had his first open heart surgery. They put a BT shunt in, and this worked well initially, but after five months, he began to outgrow the shunt. His pulmonary artery had began to narrow, so his oxygen saturations were dropping.

Leo had another operation at Alder Hey and this time they put a Sano Shunt in, and they stretched his artery slightly.

He was off the ventilator the next morning, and back down to the ward by the afternoon! This should hopefully last Leo a year or two before more intervention is needed.

Find out more about Transposition of the Great Arteries here.