A mother whose baby died waiting for a heart transplant has spoken of how she would have ‘given my own heart’ to save her child’s life.
Just weeks old, Amy Brace’s daughter Marnie became the youngest person in Britain on the heart transplant waiting list – but died, still waiting, two months later.
Through the donation of her heart valves, however, she saved the life of another child.
Amy Brace’s daughter Marnie (pictured together left with husband Nick and son Jonah) became the youngest person in Britain on the heart transplant waiting list – but died, still waiting, two months later
Mrs Brace, 31, said: ‘I would have given Marnie my heart but it’s not that simple.’
Baby Marnie was born on May 10 last year, and immediately needed medical intervention for her heart.
Doctors diagnosed her as having Noonan syndrome and hypertrophic cardiomyopathy.
It meant the little girl struggled to gain weight, a term known as ‘failure to thrive’, and had to be fed through a tube.
Mrs Brace, from Eastbourne, East Sussex, said she was ‘devastated’ when Marnie wasn’t given a heart in time, and died on October 22 last year at Evelina Children’s Hospital in London.
Both she and her husband Nick, a 43-year-old recruitment director, could feel their daughter ‘slipping away’ in her final days.
Baby Marnie (pictured) was born on May 10 last year, and immediately needed medical intervention for her heart
She said: ‘People need to be really well to be able to get their new heart because of the surgery, but in her last week she was really poorly.
‘So even if there was a heart available then we don’t know if she’d have been well enough.’
After Marnie died, her parents were surprised to hear that they could donate Marnie’s heart valves if they wanted to.
‘They’re not an organ but they’re life-saving for another child, it’s another little one and another set of parents who have been waiting,’ Mrs Brace said. She added that losing her daughter left a hole in their lives – including in that of their son Jonah, now two, who still asks after his little sister.
‘My little boy is only two-and-a half and I didn’t realise how much he would miss her’, said Mrs Brace, who is six months pregnant.
‘He still talks about her and realises there’s that gap where she’s missing. We just feel like he wants to be a big brother again.’
Now the couple will be launching a Change.org petition calling on the government to change the law on organ donation.
They hope that in the future people will have to ‘opt-out’ of donating their organs rather than specifically opting in, so no more children like Marnie die needlessly.
After Marnie died, her parents were surprised to hear that they could donate Marnie’s heart valves if they wanted to. She is pictured with her brother