At five weeks and he nearly
erally had one cuddle with him and then he was taken.
“The next day I managed to pull myself together and forced my body to get moving. I needed to be with him.”
In the first few weeks of his life, Benjamin had a shunt fitted into his heart to try to help his blood move around the organ.
Doctors then had to battle to keep Benjamin alive when his lung collapsed and caused problems with his diaphragm muscle. Ashley said: “I got to hold him at five weeks and he nearly died in my arms. They had to take him off me and quickly put the ventilator back on.”
Benjamin’s fight has been described as “touch and go” by Ashley, and now doctors say a heart transplant is his only long-term option.
But the donor heart would have to come from another baby of a similar size to Benjamin. Ashley said: “The heart has to grow with him. It has to be the right size and the right tissue to be a match for him.
“There are not many and that’s the scary thing about it.
“Every day when I wake up I think today is the day they are going to come up to me and say there’s a match.”
While caring for Benjamin in Newcastle, Ashley has had to be apart from her partner Davy Rayner, 36, and her daughters, nine-year-old Sharlene and Jessica, five. Benjamin’s dad Davy is taking care of the girls in Peterborough but brings the sisters to visit Benjamin when he can.
As she waits for a donor to be found, mum-of-three Ashley has been involved in the opt-out donation campaign.
Currently, people have to “opt in” by signing the NHS organ donor register but an opt-out system would work under a presumed consent principle. Ashley said: “I need the prime minister to change the law.
“It might not benefit Benjamin now but how many children will it benefit in the future?”
Despite his ordeal, Benjamin is still smiling from his hospital bed and loves to play with his toys.
“He’s amazed me; they didn’t think he would survive,” said Ashley. “There’s so many people who are supporting him and supporting us as a family.”