written by mum, Emma
On the 5th May 2021, our family felt complete after our son Charlie was born in the LGI at Leeds.
Everything went smoothly and we were so excited to maybe go home that day.
All those hopes quickly went out of the window when Charlie was acting unwell and lethargic, just 5 minutes after been born. He was cyanosed and not moving.
The amazing doctors quickly took him away from me to check him. He had a pulse ox check which showed he had lower levels of oxygen in his blood, at around 80%.
After nearly a day of horrendous worry and not getting better or knowing what was wrong, Charlie was diagnosed with supracardiac TAPVD (total anomalous pulmonary venous drainage).
This is where all four of the pulmonary veins are abnormally connected to the right atrium, instead of the left atrium.
Charlie’s was unobstructed which kept him with us longer while everyone was trying to find out what was wrong with him.
Unfortunately for the first 24 hours it was a guessing game to what was wrong as he wasn’t responding to any treatments, like antibiotics, CPAP oxygen or even the ventilator.
We felt so lucky to be at Leeds and they made a fast diagnosis after doing an echocardiogram at 1 day old.
Charlie was born with a rare heart condition called supracardiac total anomalous pulmonary venous drainage (TAPVD)
“I had a lot of support from CHSF. Their work towards families…is outstanding. They really feel like a family.”
We were heartbroken as we had no idea – it’s very hard to pick up on scans. But we were in the right place and had lots of conversations with the amazing cardiac team and consultants about what would be next.
Luckily this condition is fixable and can be repaired. This was the only thing we could cling onto in our vulnerable state.
Open heart surgery is the only way to fix TAPVD, so this was discussed, and we were then sent from the Neonatal Intensive Care Unit (NICU) to the children’s heart ward – L51.
It can be very scary entering a new environment after spending some time in another ward but as soon as we came to Ward L51 we were greeted with such love and care from the nurses and the whole team. We got our own room with Charlie, and we then waited there for a few days before they decided surgery needed to take place as Charlie was getting tired.
In this video, Family Support Worker Sarah shows us around some key areas of the Leeds Congenital Heart Unit including NICU and Ward L51 mentioned above, as well as our family accommodation.
13th May 2021. 8 days old and ready for his life saving surgery. We were a mess, but we had all our faith and trust in the amazing team and Mr Giuseppe Pelella who was Charlie’s surgeon. Mr Pelella came to see us, and we ran through what would happen in surgery.
We then met Children’s Heart Surgery Fund! What a breath of fresh air this lovely team are. I was in a very bad place, and I had a lot of support from CHSF. Their work towards families, whether it be just support or organising somewhere to stay if you don’t live close by, is outstanding. They really feel like a family.
We got the call to say Charlie was out of surgery and all went really well! He was repaired.
We couldn’t believe it. Of course, he needed to be very closely monitored for the next few days in PICU (Paediatric Intensive Care Unit) but we were just so thankful he was out of surgery.
The next few days felt like a blur, mixed with no sleep and worry. But the nurses were amazing and used to message us through a special app to tell us how he was doing in the night – fortunately we got good updates.
After three or four days Charlie got to transfer back to ward L51 in recovery to get home! He did well but just needed to gain some weight. After only 10 days post-surgery, we got to bring Charlie home!
Three weeks from being born, to being diagnosed, waiting for surgery, having the surgery and recovering. We couldn’t believe it, and we were so grateful.
Fast forward two years and he is the cheekiest little man you’ve ever met. He has been set to 18-month check-ups for now.
He is extremely happy, active, and always on the go! He runs me ragged but we wouldn’t change him for the world.
We hope that Charlie continues to be as well as he has done so far.
13 babies are born with heart disease every day in the UK, and on average around 400 children from Yorkshire, the Humber and North Lincolnshire need urgent open heart surgery at the Leeds Congenital Heart Unit each year.
CHSF are there to support each and every one of them, but are wholly funded by public donations, from people like you.
Children’s Heart Surgery Fund exists to support local heart warriors and their families. There is no better way to explain our charity than using a powerful story – like yours.
Please consider sharing your experiences to help others realise they are not alone, and spread awareness of congenital heart disease and the pioneering work of the Leeds Congenital Heart Unit.
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