The parents of a baby born with a rare syndrome are celebrating a U-turn by hospital chiefs who will now perform an operation to help extend her life.
Willow Scanlan was born last year with a hole in her heart and was later diagnosed with Trisomy 18, also known as Edwards’ Syndrome.
Her parents, David and Gina, 43, who live near Fyvie, were told about Willow’s heart defect before her birth and advised she would need surgery.
Parents of hole-in-the-heart baby left “sickened” by NHS Scotland decision
But after diagnosis the Scanlans were informed it was not “usual clinical practice” for medical teams in the UK to operate on children with that genetic condition.
Since then, her parents have been trying to convince health authorities to give Willow the surgery she needs to fix her heart and give her a greater chance of survival.
Now aged six months, Willow has spent most of her life so far inside a hospital and is currently in Edinburgh fighting off a recent infection.
David, 40, last night said the family had been given assurances following a referral to NHS England that Willow will be given her heart operation “when the time comes”.
He added: “Furthermore we have been given assurances that if she needs a Tracheostomy or feeding tube direct to her stomach she will get that too, though we hope that can be avoided.
“We can now just concentrate on Willow rather than trying to convince the doctors.”
The desperate parents had reached out to experts in the US who had told them the operation would be done “as a matter of course” over there and typically before six months of age.
Thankful that their pleas had not gone unheard, Mr Scanlan said: “We hope that Willow can show the NHS, along with other UK Trisomy 18 babies, that a future can be possible if we give them a chance.
“There are seldom any guarantees in life – but one thing is for sure if you give up you will never know what is possible.”