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A couple are desperately appealing for donations to send their eight-month-old son to the US for surgery.
Precious and Joseph McDonagh, from Tunbridge Wells, say that the £1million operation is the last resort for their baby to have a normal life.
Sixteen weeks into her pregnancy, Precious was told that her baby would be born with a rare heart condition.
She said: “At first, they thought he had Down’s syndrome, so I had all the scans done.”
Following an amnio test, the results came back clear for chromosome syndromes such as Down’s, Edwards’ and Patau’s, giving her hope for her pregnancy.
But, just a week later she was told that the unborn tot’s condition was far more complex than they originally suspected.
She said: “They threw termination at me a lot.
“I was walking into scans with a bump, six months pregnant and they were still saying ‘you’ve got enough time’ if you want to go the other way.”
Precious, who is Catholic, said: “Whatever God gives you is a blessing, so I went through with it.”
On Christmas Eve baby Joseph was born with pulmonary atresia with ventricular septal defect (VSD) and major aortopulmonary collateral arteries (MAPCAS).
This is where the valve between the heart and lungs is not fully developed and blood can’t flow from the heart to the lungs.
A newborn with this condition cannot live long without treatment.
At just five weeks old, Joseph was meant to undergo surgery but this was cancelled and it was not until July 4 that a staged repair of his heart was attempted.
The surgery was unsuccessful and NHS surgeons have now told the family they will not risk another operation – all they will promise the sick infant now is palliative care.
Precious said: “We haven’t been home. We haven’t lived a life like a normal family.
“Being in the hospital eight months day in, day out – you’re living the same day every day.
“The doctors are saying my little boy’s prognosis is poor – they say he’ll never go to school.”
But there is hope if the couple take young Joseph to America.
Professor Frank Hanley is chief of paediatric cardiac surgery at Lucile Packard Children’s Hospital Stanford, California.
He says: ”A child can arrive with a 1% chance of survival and, because of my expertise, I can turn that into a 99% survival rate.”
The cost for baby Joseph to undergo surgery in the States is about $1.9m.
The couple have set up a GoFundMe page to raise the money needed to get their baby his life-saving surgery.
Precious said: “I have never and will never see so much money in my life but for your child, you would do everything.”
She says the way her son has defied all the odds gives them hope that he can live a normal life if they can get him to America.
The mum said: “Joseph has proved them [doctors] wrong every single time.
“They said his brain wasn’t developed on scans, but after a last growth scan, they said his brain was perfect.
“They said he’d be born blue and wouldn’t cry, but when my child was born he was pink and cried.
“They said we’d never take baby Joseph outside and we took him even to my mother’s house for the day.”
However, time is pressing as half of all young patients die by the age of two years when VSD with MAPCAS is left untreated.
So far, the family has collected nearly £70,000, but are still in desperate need of more donations.