Coronavirus: Peterborough mum’s fear as son with heart transplant shows symptoms

Tiny Benjamin Rayner was born with hypoplastic left heart syndrome - meaning his heart was not properly developed - in August 2017, and was given just a 30 per cent chance of survival. He spent much of the early part of his life in hospital in Newcastle, miles from home.

But the little fighter was given the chance of life when he was given a heart transplant when he was still just a few months old.

Now he faces a new fight after showing some symptoms of COVID-19, and being isolated at home.

Mum Ashley Hardy, from Orton Goldhay, said she was terrified about what could happen to her little prince.

She said: “He came down with some of the symptoms recently, with a cough and a temperature.

“I was petrified, my heart was pounding.

“If he gets the virus, he won’t make it.

“We rang up the transplant teams at Newcastle, who advised us to call 1111. We have had to self isolate him for a week

“Now we have been told he needs to go into isolation for three months.

“It is a bit like when he first came home from hospital, when he was at risk of infection after the transplant.

“He is still at high risk. Even a cold could kill him, so we always have to be very careful.

“His symptoms have not been getting worse, so we are hoping he will be OK. If they get worse he may have to be blue-lighted back up to Newcastle.

“If they do get worse, they would come and test him for the virus, and then see what happens from there.

“It could be that he gets an infection, that is not the virus as well.

“He is already on a lot of medication which suppresses his immune system.

“We have been in constant contact with Freeman’s Hospital in Newcastle. They have been helping us get through this, and keeping watch over him.

“We are very scared about what might happen to him - we always have to be extra careful, but right now it is so much worse.

“He can’t see other members of his family because it is too dangerous.”

Benji - as his mum calls him - will celebrate his third birthday later this year, and Ashley said they had plans to make sure it was one to remember - although his family accept those plans may be delayed.

She said: “We want to do something big for his birthday, and we are planning something big, but we know that might have to be delayed.”

While Benji is staying at home now, he is still growing - which has led to other issues.

Ashley said: “He loves to go out, and he has his own routine. At a certain time he will walk into the kitchen with his wellies and his coat to go out.

“When we say no, he can’t go, he throws a bit of a paddy.

“It is difficult because he has just started walking as well. It is very tough.”

Despite the worries, Ashley said she knew her Benji would continue to fight through whatever he faces.

She said: “He had a major seizure before, while he was still getting treatment and he fought through that.

“He has just fought and fought his entire life.

“Allison from the Freeman’s Hospital is one of the people who is very close to my heart.She said on the third day that even when he does get a transplant, it is not a cure - it is just prolonging his life.

“He fought two blood clots on his brain, and he fought against heart disease, and he had that transplant. He is a fighter.

“I am very proud to be his mum.”

Hypoplastic Left Heart Syndrome means Benji was born with half a heart, and meant parts of his body were not getting enough oxygenated blood, while others were getting too much.

While he was still in hospital waiting for a transplant, Ashley told The Peterborough Telegraph: “He nearly died in my arms, but was resuscitated.

“At one point his right lung collapsed.

“I couldn’t hold him for five weeks, and he spent eight weeks in intensive care.”

The PT has followed his story from when he was born to the news he had received a heart transplant.

Ashley said the transplant was a bitter-sweet moment, as for Benji to be given a new heart, it meant another baby had died.

She said: “My first thoughts were with that family - they have just saved my son .

“I was happy for Benjamin, but it was really mixed emotions, because you are grieving for that family as well.

“They have no idea what they have done for him. They have no idea how much it means. They saved him. They saved a life.

“I rang his dad (Davy Rayner)- when I told him, he cried on the phone.”