The parents of a South Tyneside toddler who needs a heart transplant say they feel like they’re waiting for another child to die so theirs can live.
Little Sophie Maxwell has been battling a serious heart condition her whole life.
The two-year-old was born with hypoplastic left heart syndrome, a rare congenital heart condition that leaves the left heart ventricle severely underdeveloped.
Sophie, who lives with mum Kerryanne, dad Ian, and brothers Nathan, five, and Joshua Tansey, nine, in Whiteleas Way, South Shields, has just returned home from the Children’s Heart Unit at Newcastle Freeman Hospital after taking ill on Christmas Day.
Doctors worked to improve her heart function so that she could have surgery.
But, when the drugs failed, Sophie was added to the transplant waiting list.
Someone else has to lose a child so that we can keep ours and it’s awful to think about it like that.Kerryanne Maxwell, Sophie’s mum
She’s now back home, but faces an agonising wait for an organ to become available.
Kerryanne, 29, said: “There’s no other operation that can help her.
“But now it feels like we’re just sitting around waiting for a family to have something terrible to happen to their child. Someone else has to lose a child so that we can keep ours. It’s awful to think about it like that.
“All we can do at home is check her heart rate and oxygen levels and we’ll take her into the hospital if a heart becomes available. For now, we have to take Sophie for her clinic appointment every Thursday, which means the only day we’ll have peace of mind is a Thursday, and even then only if everything is OK The rest of the time we’re just going to be counting down the days.”
She added: “We always knew that Sophie was going to need a heart transplant, but never thought it would be this soon.
“When she has it, she’ll no longer be classed as having hypoplastic left heart, which is good, but there’s a whole new list of things to worry about – she could develop cancer because of it.
“I never thought that at two-and-a-half years, my daughter would need a heart transplant.
“She’s still her happy, smiley self, and she was great when she first came home because she still had Christmas presents to unwrap and was really excited, but that doesn’t mean she’s fine on the inside.”
Sophie had her first open heart surgery at five days old and spent the first three weeks of her life on a ventilator. She was five weeks old before she could return home.
The brave tot had a second open heart surgery just eight months into her life and doctors said she’d need another one, possibly when she was three or four years old.
Her parents began to worry on December 20, last year, when her face swelled up.
She was taken to the Royal Victoria Infirmary in Newcastle and visited by a cardiologist from the Freeman, who asked for her to be transferred to the Children’s Heart Unit straight away.
Sophie returned home on December 23, but took another turn for the worse on Christmas Day.
The youngster spent three weeks in hospital on medication to improve her heart function until doctors decided she needed a heart transplant after showing no signs of improvement.