The parents of the youngest child waiting for a heart transplant in the UK are hoping that the plight of their 19-week-old baby will help change the law on donor transplants.
Marnie Brace was born with a serious heart condition in May, and her parents have been told that without a heart transplant she will not survive. Nick and Amy Brace are calling on the public to sign a petition to urge Westminster politicians to follow Welsh lawmakers and create an opt-out organ donor system. Currently people wishing to donate their organs after their death have to sign the organ donor register or inform family members of their wishes.
Marnie’s father said he hoped their baby’s situation would move people to sign the register and lobby politicians for a change in the law. “We know that Marnie will die without a new heart, so every day we are waiting for a call. We are on tenterhooks, we can’t sleep – it is obviously very, very hard,” he said.
“But we hope that we can use Marnie’s life to get the message across that the law needs to change, so we can stop other children and their parents going through this. Everybody you know is willing to give their organs, but the law doesn’t reflect that attitude.”
Marnie was born at the Evelina children’s hospital in London after doctors noticed at her 30-week scan that her heart was not functioning normally. After the birth Marnie was diagnosed as having Noonan’s syndrome and hypertrophic cardiomyopathy. “She gets tired very quickly,” said Brace. “If you hold her, you can hear her working so hard so we can’t really pick her up.” When Marnie was born her parents were told to prepare for the worst, he said. “She has already exceeded expectations, she is a real fighter and a real spirit.”
For Marnie to get the care she needs the Braces have moved from Eastbourne and are living with their 21-month-old son, Jonah, at a Ronald McDonald charity house in London. Friends have set up a Just Giving page to help support the family, as both parents have had to give up work. “Like Marnie we have good days and bad days, but we take it in turns – if I spend the day crying, Amy will tell me to be strong and that we will find a heart, and if she is low, then I will be the strong one,” said her husband. “But I can’t even put into words how amazing the nurses who care for Marnie have been.”
Because Marnie’s heart is so tiny the chances of her finding a match are greatly reduced. According to NHS statistics, almost 49,000 people in the UK have waited for an organ transplant in the last 10 years and more than 6,000, including 270 children, have died before receiving the transplant.
“Our priority is to help our girl, but we really want people to sign the donor register, sign the petition and share it,” said Brace. “Don’t just like the page on social media – we don’t need niceties, we need change.”
Parents of baby awaiting heart transplant appeal for public"s help
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