Organ Donation Discussion Day Monday December 11th – Tell your loved ones your wishes
Across Northern Ireland, families are being encouraged to sit down with their loved ones on Monday December 11 and discuss their wishes on organ donation.
The discussion day comes as The Department of Health launches a 12-week consultation on a draft policy statement which sets out a new approach to promoting organ donation and transplantation. The policy aims to make more life-saving organs available for transplantation, through a coordinated programme of activities designed to improve public awareness of this important health issue and to encourage people to discuss their wishes with their family and friends.
A family that has felt the full impact that organ donation can have on their lives is the Guthrie family from Belfast whose daughter Sophie underwent a heart transplant in July 2016 at just three months old.
Sophie’s mum Karen said: “We first knew there was a problem with Sophie’s heart when I was pregnant and they spotted the problem in the 12 week scan, her heart hadn’t developed properly. As my pregnancy progressed her heart was gradually getting worse and towards the end doctors delivered the bad news that she probably wouldn’t survive delivery. It was heart-breaking but we couldn’t give up hope.
“Sophie was born by a C-section and she went straight to ICU where she was in an incubator, covered in tubes and we couldn’t hold her. She was so small and vulnerable. She spent three months there which was a very tough but also an amazing experience because the staff were so wonderful.
“At three months old she was placed on the transplant list for a new heart.”
Doctors told the family the chances of Sophie getting a new heart were slim but amazingly just four weeks later a heart became available and the family flew to the Freeman Hospital in Newcastle upon Tyne in July 2016.
“The doctors said the chances of getting a heart were incredibly small but we were amazed to get the call just four weeks later. The news was a mixture of excitement that this might help Sophie and anticipation as to what was ahead.
“Taking her down to the theatre for her transplant as one of the hardest things we’ve done. Leaving this tiny baby weighing only three kilos 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 Sophia 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 is now in good health and Karen; her husband Noel and son Scott are looking forward to an extra special family Christmas. “Sophie has gone from strength to strength. She's had a few infections and setbacks since the transplant but is now in really good health. Every milestone has been amazing. We are so excited for Christmas this year because this is the first one she’ll be in full health and we can really celebrate as a family.
“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.” -
A survey carried out by the Public Health Agency (PHA) 84 per cent of people in Northern Ireland said they supported organ donation, however only 42 per cent of people here are on the NHS Organ Donor Register and 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. Therefore it is 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 Head of British Heart Foundation NI (BHF NI) Jayne Murray 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.”
Social media will continue to play an integral role with families being encouraged to share that they have had the conversation and calling on others to do the same by posting their pictures and using the hashtag #Dec11Tellyourlovedones.
Supported by all charities and organisations that promote organ donation locally, the initiative has the full backing of the medical profession including the specialist nurses and doctors who directly liaise with the families on this sensitive issue.
Opt for Life, British Heart Foundation Northern Ireland, the British Medical Association and the PHA all support this initiative.
If you haven’t already signed the register or would like more information on organ donation, please take the time to visit www.organdonationni.info which is packed full of information and resources.