Plea to help tiny Peterborough baby with a big heart

Grayson Heagren was diagnosed with heart condition dilated cardiomyopathy two months after he was born last year, and spent two months of his life in intensive care in hospital. The condition means the left side of his heart is not working, putting more pressure on other organs.

Grayson, who turns one in April, was placed on the organ donation waiting list on Christmas Eve - and as he waits for a new heart that could save his life, mum Shannon (24), from Belsay Drive in Park Farm, Peterborough, made an emotional plea for people to sign up to the organ donation register.

Shannon - who has three other children, all aged six or under - said: “When Grayson was born, I could tell something was wrong. He was born prematurely, but other than that, it was a normal pregnancy. Nothing had been picked up on a scan.

“But when he was born, he was breathing really fast, and he wasn’t feeding properly.

“At Peterborough City Hospital, they thought he had an infection, and we were kept in hospital for a week before we were able to go home.

“Eight weeks went by, and he was still really struggling with his breathing.

“I called 111, and they told us to come to hospital. They thought there might be a shadow on his lung, and gave him a scan - which is where the problem with the heart showed up.

“They rushed us to Glenfield Hospital in Leicester (which has a specialist children’s heart unit), and he spent two months fighting for his life in intensive care.

“We were told it really was life or death. We were told his heart function was at about 14 per cent. It is putting his lungs under so much strain, the specialists said he needs a transplant. They said he needs it as soon as possible - when he starts crawling and walking, it will put too much pressure on his heart and lungs.”

Grayson is now at home with his family, but still cannot eat solid food, and is fed through a tube.

Shannon said: “If you looked at him, other than his tube, you wouldn’t know anything was wrong with him. He laughs and smiles and plays with his brothers and sister.

“He may only have a tiny heart physically, but he has such a big heart to have been through what he has at such a young age.”

Shannon said Grayson’s experience had changed her mind on organ donation. She said: “Before this, I would never have considered organ donation. But it is vital for Grayson and other children.

“We have been told there is a waiting list of a year. It is so important people look into donating their organs. It really is life or death for Grayson.”

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