Louise and Daniel’s son, Finley, was born with tricuspid atresia, a VSD (hole in the heart) and pulmonary stenosis . Here Louise shares their story:
We received the diagnosis of Finley’s condition at our 20 week scan.
During the scan they were unable to see all four chambers of the heart and said this was due to the position of the baby.
Two weeks later, we were at a different hospital with cardiologist specialists who undertook my scan and confirmed our unborn baby had tricuspid atresia. We were both in shock at the time. We’d never hearing anything like this before. Obviously they have to tell you what may happen – just in case – and this made my anxiety even worse. I had this picture in my head that everything was going to go wrong.
When Finley was born, he surprised us both. Hearing him cry was the best sound ever.
Finley was taken straight to NICU and placed on medication to help his little heart. He soon came off this as he was just the strongest little baby ever.
Finley was not on any medication for around two weeks. Then, one morning at 4am, I had a phone call from NICU to say he had been intubated because his oxygen levels were constantly dipping.
We were transferred to Alder Hey children’s hospital for life saving surgery. Luckily enough, we had a bed in intensive care that week.
Finley had a stent placed into his ductus arteriosus to keep the hole open (because when it’s closed he isn’t getting enough blood flow).
My partner and I were expecting the worst and were constantly on edge with what could happen.
We are thankful for the support from these kind of groups, because you do feel alone with the diagnosis of your baby being poorly. These groups (Tiny Tickers parent and carer support group) do connect you with other parents going through the same thing which is a big help.
My partner and I are looking to spread awareness about congenital heart disease (CHD). Every parent’s worst nightmare is to hear that your innocent little baby is poorly, but you know what? We wouldn’t change our beautiful little baby for the world. He is the strongest baby we’ve ever met.
Not everyone meets their hero in their lifetime, but we’ve met ours.
Now we’re facing our next battle which is his Glenn open heart surgery next month.
Update February 2020
Finley has had his Glenn surgery and he’s doing really well at the moment.
He was on his ventilator for five hours after surgery. He woke up and wanted to try take it out himself.
He’s recovering well but we will take each day as it comes
Find out more about tricuspid atresia here.
Does your baby have a heart defect? Join our Facebook support group here.