The parents of an eight-month-old currently on the transplant list awaiting a donor heart are urging families to have conversations and share their wishes about organ donation to help offer the precious ‘Gift of Life’.
Like many others, Riona and Damien Grant, never expected that they would find themselves in such a position. Their son Ollie was born with the rare and complex condition hypoplastic left heart syndrome – a defect that affects blood flow through the heart – diagnosed during the pregnancy.
It’s meant that Ollie has only spent 16 days of his life in his family home in County Down, Northern Ireland.
During the first week of his life he was airlifted to Birmingham Children’s Hospital where he was cared for by the specialist cardiac team for a number of months when he underwent several surgical procedures. Ollie has recently returned to the Royal Belfast Hospital for Sick Children after his condition stabilised.
Despite this positive news, Ollie needs a heart transplant and, like others across the country, parents Riona and Damien, are hoping for a life-saving call.
They’re now encouraging all families to have conversations about becoming organ donors and, importantly, sharing their wishes with loved ones.
Dad, Damien, said registering their children was something they had never thought about or knew was possible.
“Organ donation is so important, yet so many people don’t talk about it with their loved ones. But from the point of view of a child needing a transplant, maybe people would consider it.
"We have been on that tightrope so many times. Ollie is all smiles, but underneath he has a fatal heart condition. That's always in the back of your mind and it means you can never settle.”
Mum, Riona, added:
“We’re hoping by sharing our story we can raise awareness by getting families talking about organ donation and get more people, both children and adults, signed to the register – not just for Ollie but for the many others who need a life-saving transplant.”
Around 180 children across the UK are waiting for a life-saving organ transplant.
Children are waiting longer than before for transplants, with some sadly dying, as the number of young donors currently remains static. It’s particularly difficult to find a donor for children and babies in need of a heart as a donor of a similar size is needed.
Those children who need an urgent heart transplant will wait on average two and a half times as long as adults on the urgent waiting list.
Mr Tim Jones, Consultant Paediatric Surgeon and Clinical Lead for Cardiac Surgery at Birmingham Children’s Hospital, has been part of the team caring for Ollie. He echoed the family’s message.
“For children like Ollie, transplantation is a final option, which means it’s almost impossible to describe how important finding a suitable donor is.
“It’s difficult to imagine being in the heart-breaking position of losing a child, along with considering what happens afterwards. In a time of such immense sadness there might be the option of offering the precious gift of life to others.
“Like, Damien and Riona, we’d urge all families to have what could be difficult conversations and make their decisions known now. For the vast majority, they will never find themselves in such a position but, in such circumstances, talking earlier and being clear on wishes could make such a difference.
“We know that parents who’ve agreed to donate their child’s organs can gain great comfort from knowing they’ve helped to save other lives.”
To find out more about organ donation, please visit their website www.organdonation.nhs.uk.
From spring 2020, all adults in England will be considered as having agreed to donate their own organs when they die unless they record a decision not to donate or are in one of the excluded groups.
Findings from NHS Blood and Transplant show that while eight in ten people in England say they would definitely want to donate or would consider donating, only just over a third of adults have told their partner or family that they want to donate their organs after they die. Regardless of the organ donation decision made, the most important thing is to make sure loved ones are aware of the decision.
To find out more about this change in law, please visit www.organdonation.nhs.uk/uk-laws/organ-donation-law-in-england.