Birmingham family's 'waiting game' for son's heart transplant

The mother of a boy born with "half a heart" said they face a "waiting game" for him to have a transplant.

Vinnie, four, from Kings Norton in Birmingham, was born with hypoplastic left heart syndrome.

He has had three open heart surgeries but his family were told he was now in heart failure and needed a transplant.

His mother Claire said she was told they could be waiting four years and is raising awareness of the importance of organ donation.

"You wouldn't actually know... He is running around, full of life," she said.

"But he has learned about his body so much that he knows when he has reached his limit.

"Vinnie always knew he had a very special heart and he is actually a super hero, with super powers and when he has his tests and operations, they are to make his heart be even faster, better and run faster."

She said it has been a "heart-breaking" time for the family.

"No one knows" how long they could wait for the transplant, she said, but were told it could be anything up to three or four years.

"Vinnie is stable at the moment, if things change then things will be adapted, but at the moment it is literally just a waiting game, every day and night we are waiting," she said.

Since the law changed in May 2020, adults in England are deemed to have given consent to donate their organs when they die, unless they opt out, or are in an excluded group.

Claire said: "It is basically down to weight so he could have a young adult or teenager or a child's heart but... someone loses for us to gain.

"It is a very hard, difficult subject, the opt-in is only for over 18s, not someone younger," but she wants to encourage people to speak about their organ donation wishes.

Her wish "as Vinnie's mummy" was to see him start school next year.

"[Vinnie] is a very cheeky monkey, he has a huge zest for life and if anyone knows him they will know the first thing you will see about him is his smile," she said.

"He drives me to be the best I can be every day and the best mummy that I can be."

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