Vinnie’s story

If you ask seven-year-old Vinnie about his condition, he’ll tell you he was born with half a heart and that one day he’ll need a new one.

Vinnie has hypoplastic left heart syndrome (HLHS) and is in severe heart failure. In his short life, he has had three major, open heart surgeries to help stabilise his condition and preserve his heart. But he will need a transplant.

For parents Claire and Ben, keeping up with ‘such a ball of energy’ can be challenging. His condition means he has severe heart failure. But he doesn’t let that stop him.

“Vinnie is full of life,” says Mum Claire. “He’s very strong and knows his own mind. He’s a very big advocate for himself and his heart condition. We follow his lead. It’s not something he’s ever shied away from, he embraces it. It’s made him who he is.”

Vinnie’s parents discovered there was a problem with his heart during Claire’s 20-week scan: “We were told they couldn’t see all the chambers and then we had to wait a week to get an answer. I remember my husband literally carrying me out of the hospital. It was an incredibly lonely time. I think I stayed in bed for that entire week. I was beside myself.

Vinnie smiling at the camera with a gummy bear in between his teeth

“When we got the diagnosis, I’d had a scan and we were taken into a room. I saw the tissues and knew straight away it was bad news.”

“There were two cardiologists waiting to speak to us. They said that Vinnie had a condition called hypoplastic left heart syndrome (HLHS). To us, that was like a foreign language. But it basically meant Vinnie only had half a heart.”

After what Claire describes as a ‘very lonely but well pregnancy’ Vinnie was born.

“I spent a lot of it crying. I was so stressed and so worried We were thrown into a world that we knew nothing about, and it was very daunting. I had no baby shower. We didn’t buy a single thing. We didn’t know if Vinnie would survive the first open heart surgery which he’d need in a matter of days. I was too petrified.”

Tiny newborn Vinnie underwent the first of what would be three surgeries at just 48 hours old.

Young boy Vinnie after his third heart surgery
Young boy Vinnie after his third heart surgery.

“He was absolutely tiny. They say they work on a heart the size of a walnut. That’s how tiny it is.

“We had a smooth, journey after that first operation. He was thriving, so it was just about medications, feeds and keeping him safe in between surgeries. We were very cautious of who came to visit. I didn’t take him out anywhere in between surgeries.”

It was during this time that Claire and Ben were introduced to Acorns Children’s Hospice.

“We didn’t know that much about Acorns but when I thought of it, I was petrified of coming. I had that false idea of what Acorns was. It was a case of just going in and having a look because I didn’t know where we fit as a family.

“I always thought that it would be the most depressing place in the world, but it’s so far from it, completely the opposite. I would never be without them.

Acorns continues to be an important part of the family’s life. Vinnie visits Acorns in Birmingham for daycare, while Claire accesses support from her Family Practitioner Jo and attends the Acorns Mums Group.

“Vinnie loves his daycare visits, he literally runs wild doing all the activities he enjoys because it’s a safe place. He loves all the attention, it’s all on him, so it’s perfect. He has somebody to play with him the entire time.”

Having Acorns there whenever they need it is a huge source of comfort for Vinnie’s parents. For Claire and Ben, Acorns is a real lifeline; ‘a safe place, with real-life superheroes’.

“When Vinnie was little, Acorns was the only place I could go to because it was the only place I felt safe. It’s our only safe place even now – nobody can look after Vinnie. He can’t go to a friend’s house and play or stay over. But at Acorns he gets the care he needs, his medications and he’s safe.

“Acorns are the best babysitters in the world. He has so much fun there. I feel very lucky to be part of Acorns. The staff are real-life superheroes. It’s the most loving place with the nicest, friendliest people.”

Vinnie with Calum Chambers from AVFC smiling at the camera
Vinnie with Calum Chambers from AVFC, his favourite football team.
Young boy Vinnie showing off his new AVFC jumper for Christmas
Vinnie showing off his special AVFC jumper.