Peterborough mum’s joy mixed with heartbreak as son has second chance of life thanks to heart transplant

The mum of a toddler who has been given a second chance of life after receiving a heart transplant has said she had almost given up hope - even planning her young fighter’s funeral songs.

Monday, 7th September 2020, 5:00 am
Shannon with Grayson. Pic: Shannon Heagren

Tiny two year-old Grayson Heagren was diagnosed with heart condition dilated cardiomyopathy when he was just two months old, and has spent much of his short life in hospital fighting for his life in intensive care units.

The condition means the left side of his heart is not working, putting more pressure on other organs - at one point his heart function was just 14 per cent.

He was placed on the organ donation register on Christmas Eve 2018, and as the months rolled on, mum Shannon (26), from Park Farm in Peterborough, had almost given up hope on little Grayson ever getting the life saving operation he so badly needed.

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Grayson. Pic: Shannon Heagren

But one night this summer, in the early hours of the morning, she received the call she had been hoping and praying for for more than two years, and dashed to Great Ormond Street Hospital to see her boy before he went under the knife for his crucial operation.

However it was not just Grayson in Shannon’s thoughts, as she cried and grieved for the child who had died and donated their heart so Grayson could have a chance.

She said: “I was staying at the accommodation near Great Ormond Street, and got a call at 2am - I originally didn’t answer as I didn’t know who it was. But then I picked it up and rushed to the hospital. I was able to see Grayson before he went to sleep at 9.45am, and then for the transplant at 11am.

“I didn’t know how to react when I got the call - I didn’t cry, I was running on adrenaline, but when I went and signed the consent forms I cried. Not just because it is such a big, big operation for Grayson, and that anything can happen, but more for the child who had passed away. I’m a mum of four, and it really hit home what had happened - I was so upset that another child had passed away. I couldn’t stop thinking about that other child and their family.

“I’m there planning Grayson’s life, and they are there planning a funeral. I was just overwhelmed by it all. There were so many emotions.”

When Grayson went in for surgery, Shannon faced an agonising wait, as he was in theatre for more than six hours - but it was worth the wait as she got to greet her boy when he came out - and she could notice the change immediately.

She said: “While he was under, I just paced, up and down. I couldn’t do anything else. I just paced and paced.

“But when he came back I was able to see him, and his colour was back - he had rosy cheeks for the first time. I listened to his heart - there are no words to describe the feeling I felt.

“But you can’t stop thinking about the other child. When I saw Grayson, I couldn’t stop thinking of them - I am so thankful the family made the decision and agreed to donate. I can’t begin to imagine the pain they must have been going through.”

Grayson is now on the road to recovery, and could be heading home this week, something Shannon never thought would happen. She said: “He is now up and walking, and eating solid foods.

“Everything with the operation seemed to go really well, and there is no signs of him rejecting the heart at the moment. He will have to have regular check ups though.

“I had a down moment not long before his operation, and was ready to go home. I was planning my life with my three other children. I never thought Grayson would come home. I even had his funeral songs planned out. To be able to plan for Christmas, for halloween, it is going to be so special, and something I never thought I would do.”

This week is Organ Donation Awareness Week, and families are being encouraged to talk about their wishes if the worst should happen.

On the 20th May this year, the law around organ donation in England changed to an ‘opt out’ system. This means that it will be considered that you would be willing to donate your organs, unless you have opted out, are in one of the excluded groups or have told your family you do not want to donate.

However, consent is still needed from parents or guardians for youngsters aged under 18.

For more information about organ donation, visit https://www.organdonation.nhs.uk/