A year ago, one Leeds mum knew nothing about congenital heart disease - but then it turned her life upside down. She talked to Katie Baldwin.
James Noonan was a little miracle before he was even born. His mum Claire had been told she would almost certainly not be able to have more children following treatment for breast cancer.
Against the odds, she fell pregnant – but halfway through the pregnancy Claire and husband Edward were given the news that their unborn baby had a serious heart defect.
“Our world came crashing down,” she said.
She says it’s thanks to the expertise at the Leeds Children’s Heart Surgery Service that James is now an eight-month-old with a healthy heart.
Without the diagnosis of his condition before birth, he would probably have died soon after delivery.
And then if heart surgery had no longer been available in Leeds, he would not have survived when life-threatening complications during an routine procedure arose.
Claire, from Cookridge, Leeds, underwent intensive treatment for aggressive breast cancer after being diagnosed aged just 32.
Already mum to Niamh, now four, she was told there was a 95 per cent chance she would be unable to have more children.
So she was delighted to conceive again, but at the 20-week scan, the couple were initially told their baby had only one kidney.
A more detailed scan showed he had various heart problems, including pulmonary atresia – a malformation of the pulmonary valve – and a hole in the heart.
“It was a mixture of emotions,” Claire said.
“We were so happy to have another child but to be told he had heart problems and probably kidney problems, it was just horrendous.”
They were told their baby would need surgery and immediately after his birth he was rushed away to be given essential treatment to keep his airway open.
“Without that, his airway would’ve closed and James would have passed away,” his mum said.
“It’s amazing that they diagnosed him ante-natally. Without that, James would not be here.”
He had another procedure at a few days old and then a further one, which was supposed to be a routine process to insert a stent, aged four months.
However his heart rejected the stent and he suddenly needed emergency heart surgery.
Claire said they knew surgery would be needed eventually, but it was not supposed to be for some time. Doctors were able to create a new heart valve out of James’s own tissue and close two holes in his heart.
“Out of the worst possible situation, we got the best possible outcome,” she added.
After further complications, James needed another bout of open heart surgery the next day.
Following recovery at the Leeds General Infirmary unit, James is now at home.
His heart is working well, although his low immune system means he picks up many bugs and so the family are very restricted in where they can take him.
For James’s family, who knew nothing about congenital heart disease (CHD) a year ago, his journey has turned their world upside down.
“Survival rates are a lot better than they used to be,” Claire said.
“We are just enjoying every day that he is here.”
After the care he received at the unit, she is now keen to support it and is urging people in Leeds to back Wear Red Day.
The event, on Friday, will see fundraising for the Leeds-based Children’s Heart Surgery Fund (CHSF) – which supports the unit – take place across the city.
Claire said: “The work the unit does is amazing. The staff are just brilliant.”
Sharon Cheng, director of CHSF, said: “Despite roughly one in every 125 babies being born with a cardiac condition, and it being one of the biggest killers of babies, CHD is not widely known about.
“Wear Red Day is about spreading awareness in a fun way, and also about raising money for vital equipment, resources and other projects we fund at the LGI.”
Register at www.chsf.org.uk/wearred, or contact the charity via email@example.com or on 0113 392 5742.