Children's Heartbeat Trust in plea for more children to be included on organ donation list
The Children's Heartbeat Trust is encouraging families to have a 'heart-to-heart' about organ donation.
To mark Organ Donation Week, the Children's Heartbeat Trust is highlighting the need for more children to be included on the donation list by asking families to 'talk and sign'.
There are currently four children in Northern Ireland on the waiting list for a heart transplant. A heart transplant is a specialised procedure and the size of the donor heart must be of similar size to the recipient.
This means children on the urgent list for heart transplants will face longer waits for a suitable match - on average two and a half times longer than adults.
The overall number of heart transplants has dropped by 8% from 2017/18, meaning the wait could get even longer for these critically ill children.
Sarah Quinlan, chief executive of the Children's Heartbeat Trust, said: "Right now four local children are on the transplant list waiting for new hearts. That's four families who, every day, await a phone call that will help their child.
"Heart transplants for children are particularly difficult, due to the fact that the size of the heart has to match, but the number of children on the organ donation register is not increasing, which reduces the opportunities for many children to benefit from the life-saving gift of organ donation."
One of the four children awaiting a transplant is 11-month-old Ollie Grant. At his 20-week antenatal scan, Ollie was diagnosed with Hypoplastic Left Heart Syndrome, which means the left side of his heart doesn't function at all.
He was just a week old when he had his first open heart surgery and in April he was put on the urgent transplant list as his heart was too weak to undergo another surgery.
Talking about his condition, his mum, Riona, said: "Ollie is still a happy and smiley baby, bar his feeding tube you wouldn't know his was ill.
"He suffered a stroke following one of his multiple key hole surgeries when he was three months old but his recovery from brain damage has been great. We're so thankful for the doctors and nurses who have looked after him."
Riona has asked families to talk about organ donation: "Our main message is to just have the chat, you don't want to wait until you're put in that circumstance when ill in hospital.
"Losing a loved one is hard enough, the last thing you want to think about is organ donation. People might regret what decision they made because they're not in the right frame of mind."
Riona, along with husband Damien and two-year-old daughter Aria, put themselves on the organ donation list following the news of Ollie's condition.
"Put yourself in our position, we always thought this would never happen to me," she said.
"We knew there was a possibly he'd need a transplant but we just kept thinking with each surgery that he'll be fine. Nobody thinks this will happen to them."
Lauren Mulholland (17) had a heart transplant in 2015 that saved her life. Her mum Kitty said: "Time was beginning to run out for us as Lauren's condition really became bad.
"Twenty weeks later she received the phone call to say that a heart had become available. After the transplant, Lauren had a long and rocky road to recovery but we were very grateful as we finally got her home.
"Without the heart organ donation we wouldn't have Lauren here today."
More information can be found on the Organ Donation Register at www.organdonationni.info