This organ donation week (23 – 29 September) NHS Blood and Transplant are celebrating the fact that the NHS organ donor register has been saving lives for 30 years through the gift of organ donation.
Since its creation in 1994, thousands of lives have been saved thanks to people agreeing to donate their organs after death by confirming their decision on the NHS organ donor register.
However, more people than ever before are in need for a life-saving transplant across the UK, with more than 7,600 people on the active waiting list, including 867 in the North East and Yorkshire – so it’s vital that people confirm their organ donation decision to save lives.
The family of 10-year-old Elodie Gray have first-hand experience of the importance of organ donation and are sharing their story to encourage others to confirm their decision by joining the organ donor register as it marks its 30th anniversary.
Elodie, who lives in Bristol with her dad Colin, mum Sarah and siblings Freya and Austin was less than a year old when she received her lifesaving heart transplant at Newcastle’s Freeman Hospital.
Elodie was only a few months old when she was diagnosed with dilated cardiomyopathy after struggling to shake off a cough and cold. “Everything seemed to happen so quickly!” Explains Colin “We’d been backwards and forwards to the doctors as she just couldn’t seem to get over her cold. After the doctor listened to her heart Sarah was told to take her straight to the hospital.”
A scan at the hospital revealed that Elodie had dilated cardiomyopathy and needed either medicine to try and help her heart recover – or a heart transplant.
Colin and Sarah were told Elodie would need to be put into an induced coma while they waited to see if the medication would work. However, it quickly became clear that a heart transplant would be her only option.
There are only two hospitals in the UK that carry out children’s heart transplants and Elodie was transferred to the Freeman Hospital – travelling to Newcastle by plane with her mum while Colin made the journey north by car. He said: “We’d been told it was possible Elodie wouldn’t survive the flight, she was so small, they we worried she wouldn’t cope with the vibrations from the plane. It was a difficult drive up not knowing if she had landed safely.”
Elodie’s journey to transplant was no less challenging, surgery to help her heart recover was unsuccessful and she was placed on a Berlin Heart (a machine which takes over the job of the heart and pumps blood around the body to keep the brain and other organs healthy). There are risks associated with a Berlin Heart and Elodie suffered a stoke and multiple cardiac arrests.
“We were told by Elodie’s doctors that she would need to come off the Berlin Heart which meant we’d have to say goodbye to our little girl. Amazingly that night we received the call to say a heart had become available and we needed to get back to the hospital while they prepared Elodie for surgery.”
Surgery was successful and earlier this year Elodie celebrated the ten-year anniversary of her heart transplant. Her family remain eternally grateful to her donor and their family as Colin explains: “I wouldn’t have my daughter if it wasn’t for that family who made the brave decision to donate their child’s organs at the most devastating of times.
“Elodie has been able to live her life – she loves to play football, loves to sing and has even taken part in the transplant games! She knows what has happened to her and how serious it was, and she just wants to help people.
“People don’t always realise how important it is to confirm their decisions around organ donation – have that talk, make time for those conversations. Elodie is a living, breathing example of just how important organ donation is.”
With the law changing around organ donation, it is important to remember that it is assumed that when someone dies in the circumstances where they could be a donor, that they agree to donate if they haven’t officially opted out. However, no-one is automatically added to the Organ Donor Register. You still need to confirm your decision, and your family will be consulted before donation goes ahead.
The Organ Donor Register was set up to promote organ donation and allow people to record their decision to donate. It was the result of a five-year campaign by John Cox and his daughter Christine after their son and brother, Peter, died in 1989. He had asked for his organs to be used to help others.
Anthony Clarkson, Director of Organ and Tissue Donation and Transplantation for NHS Blood and Transplant said: “Thanks to the support of families like Elodie’s during Organ Donation Week, we can get the message across to more people that organ donation saves lives.
“Every day across the UK thousands of patients and their families are waiting for a life-saving call. But this can often only happen as a result of another family receiving very difficult news and supporting organ donation to help others.
“Thanks to the Cox family’s relentless campaigning the NHS Organ Donor Register has potentially saved the lives of thousands of people. This is an incredible legacy for Peter, and we are so very grateful to the whole Cox family for their tireless work over the years which made this possible.
“With more people, both adults and children, waiting for transplants, it’s more important than ever to confirm your organ donation decision on the NHS Organ Donor Register. We urge everyone to take a moment this Organ Donation Week to register and confirm your decision.”
