THE family of a Co Antrim toddler who had a heart transplant when she was just three months-old after being given limited chances of survival has urged the public to consider organ donation.
Sophie Guthrie, who is now 21-months-old and lives in Whiteabbey, was flown to Newcastle-upon-Tyne to undergo the life-saving operation in July last year after her little heart hadn't developed properly while she was in the womb.
Spending her first few months in an incubator where her parents couldn't even hold her as she was so frail, doctors warned it was highly unlikely that a suitable organ match would be found.
Karen and Noel Guthrie were told to prepare themselves for the worst but four weeks after their tiny infant was placed on the transplant list, they got the call to travel to the world-famous Freeman hospital for the major operation.
"Taking her down to the theatre for her transplant as one of the hardest things we've done," said Karen.
"Leaving this tiny baby weighing less than 7lbs and hearing her cry as we left her as heart-breaking. Amazingly the transplant went incredibly well. We stayed in Newcastle for seven weeks in total and I was with Sophie for the last five on my own. It was an incredible time. The first time I'd been able to hold her and bond with her. It was just the two of us in the hospital room together and I got to know every wrinkle and every freckle on her."
Sophie responded well to the surgery but her immune system was severely compromised - and in February this year she became seriously ill after contracting sepsis.
"After all she'd been through we thought we going to lose her but she came back fighting again," added Karen.
This will be her little girl's first 'healthy' Christmas where she will be without a feeding tube and eat turkey and ham with her family.
"She was very vulnerable last Christmas and we couldn't take her out due to the risk of infection. This year it will be completely different and she will be able to play with her four-year-old brother Scott and all her toys. To look at her now you would think she is like every other toddler but she's is a miracle."
The Guthries have decided to share their story to raise awareness about organ donation at a time when the Department of Health is launching a 12-week public consultation on a draft policy setting out a new approach to promoting organ donation and transplantation.
"We don’t ever forget that another family gave us the greatest gift of all, a chance for Sophie to live her life. In their darkest moments when they lost their own child they made this decision to donate their own baby’s organs. It's something we are thankful for every single day," said Noel.
Research by the Public Health Agency (PHA) shows that while 84 per cent of people in Northern Ireland say they support organ donation, less than half the population are on the NHS Organ Donor Register.
A common reason for families refusing to give consent is that the potential donor's family were not aware of their loved one's wishes.
The Guthries said it was extremely important that people register and tell their loved ones as families have to consent to donation going ahead, irrespective of whether their loved one is on the organ donor register or not.
Speaking about this year's 'family discussion day' Jayne Murray, head of British Heart Foundation NI said: "In Northern Ireland the family refusal rate is 38 per cent which is considerably higher than some other European countries where it is often less than 15 per cent. Nobody wants to leave their family with such a burden so we want to encourage everyone to make it clear what their wishes are. We need to get to the point where organ donation is high on the list of important conversations we routinely have with loved ones."
