written by mum, Tamra
At 2:48pm on the 18th July 2022 our little boy, Finley Kenneth Peirson, was born.
After 6 hours of labour, we were over the moon with him. However, at around 8pm his oxygen levels dropped, and he was rushed to Scarborough’s Special Care Baby Unit, SCBU.
Here Finley was given two weeks of antibiotics. At the time, I unknowingly had Strep B, so I also got an infection and ended up being sent back to theatre to be re-sutured.
On Monday 1st August we thought we would finally be coming home. Unfortunately, that wasn’t the case…
At 5am, we received a call that Finley had massively deteriorated due to lack of breathing and had been put in an incubator.
They were completely puzzled as his infection markers had dropped, so multiple doctors had to check him over. One doctor was adamant he heard a heart murmur and so they called Dr Mac, the cardiologist.
Dr Mac found a defect on Finley’s heart so our little, two-week-old, boy was blue-lighted from Scarborough Hospital to Leeds General Infirmary (LGI) with the Enhance Ambulance Team. On arrival there was a team ready to scan our baby’s heart.
Finley went straight to the Neonatal Unit L43 for a detailed echo and, once this had been completed, a surgeon came to explain to us exactly what was happening with Finley’s heart.
Miss Carin Van Doorn, the Congenital Cardiac Surgeon, explained that Finley had what’s called supracardiac total anomalous pulmonary venous drainage (TAPVD) which means the pulmonary veins do not connect normally to the left atrium. Instead, the four pulmonary veins drain abnormally to the right atrium, through an abnormal connection.
“…we were given accommodation at in Brotherton Wing at the hospital, courtesy of Children’s Heart Surgery Fund. This was a godsend.”
Finley needed open heart surgery as soon as possible. He had taken two weeks to actually produce the symptoms properly and was rapidly going downhill.
Carin said it was actually the small duct in his heart that usually closes, but Finley’s had stayed open and that’s how he had survived for 14 days before deteriorating.
We were told theatre would be within the next couple of days.
At this point we were given accommodation at in Brotherton Wing at the hospital, courtesy of Children’s Heart Surgery Fund. This was a godsend as I’d only had surgery myself days before and was currently in a wheelchair and couldn’t walk or drive.
Finley had his surgery on the Wednesday, and then had around the clock care in the Paediatric Intensive Care Unit, L47 (PICU). By Friday he was moving to Ward L51, to the High Dependency area of the Children’s Heart Ward. Because of all the amazing staff on these wards, Finley finally got to go home on the following Thursday – staying a total of 24 days in hospital.
As first-time parents, we never imagined anything like this to happen when thinking about having our baby boy.
We owe so many people a massive thanks, especially Carin Van Doorn and her team for accomplishing the operation and saving our baby boy’s life. Multiple members of staff from all the Children’s Heart Surgery Fund wards looked after Finley for the 11 days he was in Leeds.
Finley still has a long way to go as he has a Cor Tritriatum* which the cardiac consultants are reviewing every three months, and a Coarctation of the Aorta which was found in April. This also means Finley needs more heart surgery which we are currently awaiting a date for.
*Cor triatriatum is a rare condition occurring when a child is born with a thin, fibro-muscular membrane subdividing either the left or the right atrium into three chambers.
If anyone wants advice, or support, please do get in touch as it is a very overwhelming experience to go through and talking to others helps massively if you are going through something similar.
“This is the tattoo I got done a month after Finley’s operation. I wanted something to represent him and everything he went through, and the charity just represented it all. The pandas are me and dad, plus Finley took his toy panda into theatre with him so it represents us as a family and what you guys did for us.” — Tamra
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.
MORE REAL STORIES
Olly is 9 years old and he had open heart surgery at the Leeds Congenital Heart Unit this year. On 4th February this year, Olly was admitted to hospital with breathing difficulties. He didn’t come home for 48 days. Many of those days were spent in an induced coma, on...
At CHSF, we a so grateful witness countless inspiring stories of strength and resilience from children and their families as they navigate the challenges of congenital heart conditions. Sonny is just one of those children…Sonny's dad, Adam, writes: “Our son Sonny has...
Charlie's story 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...