Mum’s Desperate Plea For New Heart For ‘Ticking Time Bomb’ Tot Unlikely To Live To Second Birthday Unless Donor Organ Found
A mum has issued a desperate plea as her son is unlikely to make it to his second birthday – unless a new heart can be found for him.
Little 13-month-old Grayson Heagren was diagnosed with rare heart condition dilated cardiomyopathy at two months old and was put on the heart transplant list on Christmas Eve last year.
But the ‘ticking time bomb’ tot still hasn’t found a donor and mum Shannon Heagren, 24, has been told he is unlikely to live beyond two years because of the strain his heart is under as he gets older.
The condition has enlarged one side of his heart, making it difficult to pump blood round and the tot often ends up in hospital with complications – meaning his family live in fear of his heart failing at any time.
Shannon, from Peterborough, Cambridgeshire, said: “We don’t know how long he will manage without a new heart. They’ve told us it’s unlikely he will make it to his second birthday.
“It’s a race against time. It’s a ticking time bomb because we don’t know how long it will take and in that time his heart can get worse.
“He won’t have a future without a new heart. But he’s a fighter so we treat every day as a new day.
“I live in hope that a heart will be found. I have to for my kids but I find it very hard to keep that hope.
“I like to believe it will come but the truth is I don’t know. I just know I can’t give up.”
After Grayson was born the mum-of-four said she noticed straight away that something wasn’t right as he was breathing fast, couldn’t keep milk down and took a long time to feed.
He was initially kept in hospital for a week and put on antibiotics for an infection but after being taken back to Glenfield Hospital in Leicester for a heart scan Grayson was diagnosed with dilated cardiomyopathy at just eight weeks old.
Doctors revealed his heart function was at 14 per cent spent the next four months in hospital – two of which were in intensive care.
Shannon said: “When he was brought in they said it was life or death and if I’d left it any longer he wouldn’t have made it.
“There was one point where they had to put a line into his vein to give him medicine and they didn’t know if his heart would be able to cope or if it would shut down immediately.
“They told us that we should prepare to say goodbye to him so I called my family and they came to his bedside.
“Thankfully it was successful and he pulled through it.
“Those four months were horrible. I just spent the whole time crying, I was hysterical.
“I couldn’t eat or sleep. I just didn’t know what was going to happen.”
Grayson’s heart function is still only operating at 14 per cent which puts a strain on his other organs.
He is unable to eat solid food, has to be fed through a tube and is on 10 different medications to stop his heart deteriorating.
Shannon also has to keep him as calm as possible to try and minimize the strain on his heart and he frequently suffers from chest infections,, pneumonia and bronchitis.
The full-time mum, who has three other children, Amelia, seven, Aiden, four, and Riley, two, said: “Because his heart is so weak, he gets sick really quickly.
“Every time he goes to hospital we don’t know if he’s going to make it out again.”
“We don’t stop him doing things, but have to try and keep him calm so he doesn’t tire himself out.
“He’s got no energy and spends a lot of the day sleeping.
“But he’s a fighter and he’s done really well. Obviously he gets sick, but he’s always got a smile on his face and loves playing.”
Grayson was put on the heart transplant list on Christmas Eve 2018 but so far a suitable organ has not been found.
According to the NHS figures, in August last year there were 280 people waiting for a heart transplant, including 29 children.
Shannon said: “We don’t know how long it will take for him to get one. The hearts go to whoever needs it most.
“We could get a call anytime and we have to be ready to go.
“I have my phone with me all the time in case it’s them and we’re not even allowed to go out of the country in case we get the call.
“It’s horrible to think about what the parents of the donor will go through and having to make the decision after losing a child whether to donate their organs.
“Not many people can imagine having to give their child’s heart away.
“Before this I wouldn’t have given my children’s away, but now they are all signed up for organ donation.
“I think it’s so important if it will help someone else live. I see it as it’s comforting to know that your child has helped to save someone else – and in a way they’re living on.
“I want to see my boy grow up and go to school. I want him to be able to live a normal happy life.
“But for now we take each day as it comes. We never know what tomorrow will bring but we try and see every day as a new day.”
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