‘We are treating this Christmas as his last - just in case’: Mum of tiny Peterborough lad who needs a new heart

A Peterborough family are hoping for the best Christmas present ever - a new heart for their baby son who is fighting for his life in hospital.

Tuesday, 24th December 2019, 7:20 am
Grayson in Hospital

A Peterborough family are hoping for the best Christmas present ever - a new heart for their baby son who is fighting for his life in hospital.

Tiny one-year-old Grayson Heagren was born with heart condition dilated cardiomyopathy, and was placed on the Organ Transplant Register on Christmas Eve last year.

Twelve months on, mum Shannon, from Belsay Drive in Park Farm, Peterborough, is waiting for the call that could mean the difference between life and death, as she sits by her son’s bedside at Great Ormond Street Hospital.

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Grayson has been at the London hospital for two weeks now, and the family have been told he will not be allowed home until a donor has been found.

Shannon, who has three other children, aged seven, five and two, said they were now treating this Christmas as Grayson’s last, after almost giving up hope that a donor family will ever come forward - but while Grayson’s tiny heart keeps beating, she is remaining alongside her little fighter.

She said: “We are treating it as potentially his last Christmas – I always expect the worst and hope for the best. But he is getting worse and worse. If we get another Christmas with him, it will be a bonus. We are just waiting for that phone call, that would tell us he has a new heart, a chance of life.

“For that, it would mean the parents of a baby who has passed away to donate their heart. We know that is a difficult and emotional decision to make for people. Not many parents want to give their child’s heart away. But it would give Grayson a chance.”

The tot’s condition means the left side of his heart is not working, which is putting pressure on his other organs.

Shannon said: “He is so tiny because his heart uses up all the calories.

“His left lung collapsed, and he has to have physio every day to help it. The other organs are really deteriorating as well, because of the pressure from his heart. His kidney function is not great.

“My other children have not been down here yet, because I don’t want this to be their last memory of Grayson.

“I haven’t seen them while we have been here, because I have to do what is best for Grayson. It is horrible – I want to be in two places at once. The two weeks we have been here have felt like two years.”

Because of the pressure being put on Grayson’s other organs, doctors are currently deciding on whether to fit a Berlin Heart, which is used to take over the function of a child’s heart when it becomes too weak to pump sufficient amounts of blood to the lungs.

Shannon said: “It is so difficult, because it is a really big operation to fit it. When he is under, it is horrible. You don’t know if he will wake up. When he does come round, he is on so much morphine, he is really drowsy and sleepy, but he keeps on fighting.

“He is on new medication, and doctors are waiting to see how that goes. We are just waiting at the moment.”

Grayson is not allowed to leave the site, but can go for walks around the hospital and play with other youngsters on the Bear Ward.

His story has also been shared on Facebook by Shannon, with people from across the globe following his progress. Shannon said: “It is really nice to see the messages, and all those positive words and prayers. It makes you realise you are not alone, and everyone is in it together. We have had messages from people from across the world and it has been a big help to us all.”

To follow Grayson’s story on Facebook, search for Grayson’s Journey.

Factfile on organ donation

The law surrounding organ donation in England will change in Spring 2020.

The new law, often referred to as Max and Keira’s Law, after campaigning from Max Johnson and his family when the youngster needed a new heart - and it was donated by Keira Ball, who passed away aged nine - means residents will have to opt out if they do not wish to donate their organs.

The law in England currently states people have to opt in to donate.

However, the law does not apply to youngsters under the age of 18, and parents would have to make the decision on whether to donate organs or not.

For more information on organ donation visit www.organdonation.nhs.uk