Ollie has defied the odds since the day he was born. His mum and dad, Beckie and Stephen, were told he wouldn’t survive birth – now, he’s approaching his fourth birthday.
But, to save his life, Ollie needs a heart transplant that he might not live to receive.
Ollie has hypoplastic left heart syndrome, a rare condition that means his heart is underdeveloped. Many babies with this condition die before they’re a week old.
Instead of experiencing the joy of welcoming a newborn, Stephen and Beckie were by Ollie’s bedside after his first open heart surgery at just days old. His chest was left open while he was on ECMO life support, and he wasn’t expected to survive the weekend.
But Ollie lived.
He lived through that weekend, then the next and then the next. He even lived through another major open heart surgery and, despite the odds stacked against him, his condition stabilised.
Sadly, little Ollie’s life wasn’t going to be simple and, in February 2022, he went into heart failure.
Now, Ollie and his parents endure the long wait for a heart transplant.
Faced with Ollie’s uncertain future, Beckie and Stephen live to make the best of each moment with their little boy.
“We found out about Tŷ Hafan when Ollie was in intensive care,” says Stephen. “When we got home, we were worn out emotionally, mentally and physically.
“Tŷ Hafan contacted us and offered us a stay at the hospice. It was perfect as we had hardly slept in seven weeks while Ollie was in hospital and, knowing he was properly cared for, we could actually rest.”
Ollie has regular checkups, NG tube changes and transplant blood tests. Sarah, a Play Specialist at Tŷ Hafan, uses play to help him cope.
“Now when he goes into hospital, he just puts his arm out to have his blood and blood pressure taken. He is now used to having his SATS done. He used to be so scared but now he is comfortable and just goes with it. He has come a long way,” says Beckie.
Ollie, Beckie and Stephen are supported by Tŷ Hafan both at our hospice and in their local community. For the past 18 months, the family has been going to the Community Hubs in Port Talbot.
“Tŷ Hafan has made a massive difference,” says Stephen. “Every little thing they do is amazing, from family support to the Community Hubs and the dads’ groups – everything helps.
“We’ve been going to the Port Talbot Hub for over a year – me, Ollie and Beckie. Ollie really enjoys them and so do we.
“He loves the arts, crafts and sensory play, and me and Beckie sometimes have a massage from the Complementary Therapy team which really helps with our stress.
“The Family Support Team at the Hubs, and the other families, are friendly and supportive. Everyone’s made to feel welcome, and we can talk about anything.”