Peterborough mum’s vital organ donation message as son continues recovery from heart transplant

The Peterborough Telegraph has followed the story of Park Farm youngster Grayson Heagren, aged two, who had been waiting for a heart transplant since Christmas Eve 2018. The toddler had been in hospital since November and his family were losing hope when his call came over the summer.

He is now recovering at home following the operation at Great Ormond Street Hospital.

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Grayson was one of a growing number of children who need a transplant, and mum Shannon (26) said: “I can’t thank Grayson’s donor family enough, I can’t put it into words – they have saved Grayson’s life and if it wasn’t for them, I could be in their position.

“When you pass away your organs are going to be buried or cremated, don’t waste them if you can give someone at chance at life and gain something positive from something so sad.

“I just want a normal life for Grayson now, I want him to go to nursery and he should be doing all the things other children his age are. A family has given him a life and we want to make the most of it.”

The number of children receiving a heart transplant more than doubled during the first six months of the global pandemic, according to figures released by NHS Blood and Transplant. The organisation is highlighting the figures as it also reveals the waiting list for heart transplants remains stable, with dozens of youngsters still waiting for a life-saving donor.

Families are being encouraged to talk about organ donation and share their decisions to help save more lives, particularly children waiting for a heart transplant who are often relying on a young donor and sadly many die before a match is found for them.

There were more heart transplants in the UK during the first six months of the global pandemic than in the same period last year with 97 people receiving a heart transplant between March and August 2020, compared to 87 in 2019. Of those, 22 were children, compared to eight children receiving transplants in the same period last year (1).

There are believed to be a number of factors behind the increase in heart transplants, and heart transplants for children, including the fact that heart transplant operations continued for the most urgent patients during the peak of the pandemic, high consent rates amongst families during COVID-19 - almost 75% of families approached about organ donation said yes in March (an increase on the average consent rates of around 68%), and the fact that a handful of older children received hearts from young adult donors who were able to donate after circulatory death (DCD) thanks to a new UK wide pilot scheme.

Shannon is now preparing for the Christmas she thought the family would never have.

She said: ““e was doing alright, he’s always been happy and smiley no matter what. But he needed a Berlin Heart fitting in January to keep him stable and was having a few hiccups.

“I was starting to feel like his transplant was never going to happen and the night before I was having a moment where I had had enough, Grayson had only spent a total of about 90 days of his life out of hospital at this point and I had three children back home who were going through a lot too.

“When I got the call it was just overwhelming, I couldn’t take it in and I knew someone else had just lost their child – it was emotional.

“Everything went fine with the transplant and Grayson is doing so well. A couple weeks later he was home and it is still surreal to have him here and not having to keep going into hospital.

“Grayson has so much energy now, he does not stop! He is into everything and wants to go everywhere, he loves playing with his brothers and sister who hadn’t seen him since Christmas.”

Dozens of children are still on the waiting list and face waiting two and a half times longer than adults when they are in urgent need of a transplant (2). Although there has been an increase in heart transplants, more patients have also been added to the waiting list. There are currently 333 patients in the UK waiting for a heart transplant and more than 10%, (37) are children (3). It is particularly difficult to find a donor for children and babies in need of a heart. The size of the heart is important, meaning particularly for small babies, they need a heart from another child. (4).

For many children waiting for a heart, a young donor is their only hope. For some the call never comes, in the last year, seven children in need of a heart died before an organ could become available for them. In the last five years, 39 children – similar to the number of children who currently need a heart transplant (37 at 17 September 2020), have died before a donor heart has become available (5).

John Forsythe, Medical Director at NHS Blood and Transplant, said: “It has been great to see heart transplants continuing during this pandemic and incredible that lots more children have received a heart compared to the same period last year.

“However, the waiting list remains stable and we particular need more young donors to help those children waiting. They are often relying on another child to save their life.

“We know this remains a very worrying time for anyone waiting for an organ transplant. We have plans in place with our hospital colleagues for a second surge in COVID-19. Those plans are being reviewed regularly to keep up with new information. We are keeping clinicians and patients informed on COVID-19 in transplantation and as always safety is paramount.

“During the pandemic we have seen incredible family support for organ donation and life-saving transplants. This is testament to the strong foundation of altruism in the UK and we hope to see this continue, particularly with the change in the law in England, and change in Scotland in 2021, around organ donation.

“We need every family to talk about organ donation, for all members of the family, whatever their age, and make their decision known.”

To find out more or to register your decision on the NHS Organ Donor Register visit www.organdonation.nhs.uk. Please make sure you share your decision with your family.