Rachel Boddle and Tom Butler have made a desperate plea to make others aware of the importance of organ donation as they face a race against time to save 10-week-old Willow.
The couple, who live in New Queen Street, had their world turned upside down before Christmas when they went to hospital for a routine checkup.
Rachel, 25, said: “We went for our 20 week scan and found out we were having a girl.
“However, it also showed she had a severe heart defect,
“We were told she probably wouldn’t survive and were offered a termination.
“This was on Christmas Eve.”
The doctors told them that in effect, Willow had only half a heart.
She suffers from right ventricle dependent coronary circulation, one of the rarest forms of heart defect. It means Willow relies on just one part of her heart to keep pumping.
Willow was also diagnosed with hypoplastic right heart syndrome, a pulmonary atresia and a right coronary aneurysm. Rachel and builder Tom, 26, decided they would keep their baby and found a support group on Facebook for parents who had gone through similar experiences.
The baby was born in Leeds 10 weeks ago after Rachel carried her to a 39 week term.
Within a week she had already needed one keyhole operation to save her life but, miraculously, was brought home to Scarborough just one week later.
Congenital heart defects can affect three out of every 1,000 children born in the UK but the sheer number of problems Willow faced made her odds of survival very long.
But with the love of her parents and a lot of fight she has blossomed into a health baby.
Rachel added:“We were able to bring her home at two weeks and now, 10 weeks later, she is a beautiful pink baby girl.
“She is a bit more tired than other babies and a nurse comes once a week to check on her and then we go to the hospital every fortnight so she can be looked over.
“She is our miracle baby. The doctor told us it was the worst case of heart defects he had ever seen but here she is, still fighting.”
Willow’s middle name Mireyah means miracle in Spanish.
The pair, who have two other children four-year-old Amber and one-year-old Harvey, are now trying to raise as much awareness of organ donation as they pray that a new heart can be found.
“We have been told it is a very long shot but we’ve been down to Great Ormond Street in London and last Thursday she was accepted onto the waiting list for a heart.
“The doctors say that she needs the heart before she turns one so we are going to do everything we can to try and get the message out to people.”
Rachel and Tom may get a call from Great Ormond Street at any moment day or night to say a heart has been found.
Congenital heart defects kill more children every year than any other form of defect or illness combines.
Rachel has set up a Facebook blog called ‘Willow the Heart Warrior Princess’ and Tom has been raising money for heart defect charities.
To find out more about organ donation visit www.organdonation.nhs.uk.