Billy was diagnosed with Transposition of the Great Arteries at his mum, Rebecca’s, 20 week scan. Here she tells their inspiring story:
‘At my 20 week scan we were informed our baby had Transposition of the Great Arteries (TGA), an unusual condition affecting 1 in 10,000 babies. We were immediately referred to the cardiology team at the John Radcliffe hospital in Oxford, where they confirmed diagnosis.
From this point onwards my pregnancy became a whirlwind of appointments and scans…it stole a lot of the joy for me and my family.
We had a planned induction booked for the 10th may 2016, at 39+1 days gestation, but our little man wasn’t hanging around and arrived at 7.30am on Monday 9th may 2016. I had the briefest of cuddles before they took him off to stabilise him and start him on the lifesaving medicine he required.
Surgery
The first week of his life was horrendous. We learnt things that no first-time parent- let alone any parent – should know how to do. This included how to pull our little one out of an apnea.
At seven days old he was taken to theatre. This should have been a ‘simple’ four or five hour operation. However, our son was gone for 13 hours and had to be resuscitated twice. His heart simply failed to start after he was taken off the bypass machine. We were told he wasn’t going to make it.
Two hours later, we were told that he had miraculously come around and he was taken to PICU. We saw him for the first time in 14 hours surrounded by doctors and nurses, with an ECMO machine set up beside him ‘just in case’. It was the longest and scariest night of my life.
Our son’s chest was left open for seven days due to horrendous swelling. Seeing him lying there so helpless and not being able to hold him or comfort him was terrible. I can’t explain the helplessness. After nine very long days I got my first cuddle and you’ve never seen a happier woman! The next day he was taken back to the high dependency unit and we were on our long slow road to recovery.
Day by day our son got stronger, although we took three steps forward and two steps back for a long time. Our biggest struggle was establishing feeding. Having been tube fed since day one, he had no concept of sucking and swallowing and unfortunately, I was unable to breast feed. Eventually he got the hang of bottle feeding.
Going Home
Going HomeWe were released from hospital when Billy was one month and one day old..and we haven’t looked back! My little boy is now two years old and loving life! We have regular cardiology check ups at our local hospital and have seen various other teams to ensure he’s developing as he should. Every day I’m thankful for this gorgeous happy boy, I couldn’t be prouder!
Early Detection Of Transposition Of The Great Arteries
TGA is only picked up in roughly 1 out of every 3 cases. We were extremely lucky as the ultrasound technicians had undergone training a week before my scan. Many babies with TGA will have a secondary heart condition and many have a VSD, including Billy. As a result a lot of babies with TGA are sent home undiagnosed.
We were lucky we had a specialised team around us when Billy was born and that he received the treatment he required straight away. It also gave us time to prepare for his arrival…though nothing quite prepares you for the reality.
My message to other parents of heart babies is: keep strong – our heart warriors are fighters!
Find out more about Transposition of the Great Arteries here
On the 20th December 2018 the Christmas lights of Seven Dials in Covent Garden will flicker in time to Billy’s heartbeat in order to raise funds and awareness of Tiny Tickers’ work. Find out more about the Twinkle Twinkle Little Heart Appeal here.
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