Healthy Living: ‘Heart defects affect a great many babies’

Cerys  from Royston in Barnsley who has a congenital heart defect and will probably need a transplant in the future with her mum Sophie.
Cerys from Royston in Barnsley who has a congenital heart defect and will probably need a transplant in the future with her mum Sophie.
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SOPHIE Smith was in her 20th week of pregnancy when she was faced with a heart-rending decision.

Doctors had spotted that her baby daughter was suffering from a potentially fatal congenital heart defect – and might not even survive birth.

So the medics offered Sophie and her partner, Gareth, the choice of whether or not to have their child terminated.

“They always tried to make us realise it was on the table if we chose – but it was never an option,” said Sophie, aged 40.

The couple, from Royston, Barnsley, went ahead with the birth – and 17 months on, their little girl Cerys has survived, despite struggling with cardiac problems.

Cerys has coarctation of the aorta – a narrowing of one of the most vital arteries in the body – and a condition called AVSD, leaving her with a hole in the centre of her heart.

She went into cardiac arrest at nine weeks old, has already undergone open heart surgery, and is expected to undergo another two operations in future.

“The way we looked at things was that hearts are more easily fixed than things like brains. We had to give her a chance,” Sophie said.

This week is Congenital Heart Defect Awareness Week – and Sophie said she wants people to be more mindful of the fact that such illnesses affect a great many babies.

“You tell people about CHD and they look at you blankly,” she said.

“They think heart disease is something that only affects older people. Knowledge is power and some simple checks can find it.”

Cerys’ problems were picked up in her mum’s 20-week scan at Barnsley Hospital.

“There’s no cardiac unit at Barnsley but they would notice something major. They could see that there were no chambers in her heart. We were sent to the unit at Leeds and they gave us a whole list of problems there – it was a bit numbing, really.

“I can remember being in the car back from Leeds, but I can’t recall anything about the journey.”

Cerys was induced 12 weeks early, and Sophie said the birth went ‘very smoothly’.

“It went like clockwork, even though we couldn’t guarantee that she would survive the birth,” she added.

Cerys was allowed home just over two weeks later, but within eight days went into cardiac arrest.

Sophie said: “We didn’t really know what was happening. An ambulance came and took her straight to Barnsley. It took six hours to stabilise her, she did actually die in hospital that day but they brought her back.”

Surgeons at Leicester’s heart unit performed an operation known as a ‘first stage Norwood procedure’, where the main pulmonary artery is joined with the upper portion of the aorta.

“She left hospital on Christmas Eve and she’s doing so well,” Sophie said.

“Cerys now has just half a heart, she has a completely different circulation to other babies. We just have to grow her now, but steadily.

“We’re waiting for operation number two, and operation number three will happen when she starts school.”

The origin of the infant’s heart defect is a mystery, as none of Cerys’ family have had cardiac issues.

“Nobody in the family has anything wrong with their heart at all,” said Sophie, who lives with Gareth, a tyre fitter, and has another daughter, Mia, three, as well as older son Harry, 15.

“I was taking medication during the pregnancy, and I wondered whether it was something to do with that, but we’ve decided we’re not going to look for an answer.

“It’s like trying to make somebody accountable for it. We’ve just put it down as one of those things.”

She continued: “More heart defects kill children than die of cancer and leukaemia, and yet nobody seems to know what CHD is. More people need to know about these things.”