“Luca would never have been able to go swimming if it wasn’t for Claire House.”
Even with only half a working heart, mum Vicky’s son, Luca, has so much love to give. Here, she shares how Claire House has been there to help build his confidence and offer support.
“We knew something was wrong at Luca’s 20 week scan,” says Vicky. “When he was born, they confirmed it was hypoplastic left heart syndrome, which means he was born with half a working heart.”
Luca had his first surgery at just six days old.
“We stayed in the hospital for six weeks afterwards and, with it being during the Covid pandemic, his sisters couldn’t even meet him until he was seven weeks old.”
Luca had severe reflux and, as a result, struggled to put on weight but after his second surgery, when he was four and a half months old, things started to settle.
Then Vicky was then introduced to Claire House Children’s Hospice.
“I was initially in denial about needing Claire House. I just could not understand, at the time, what they could offer Luca.
“But the team were wonderful and invited us to their baby group.
“For a mum who’d had to isolate, we hadn’t been to any groups, like with his sisters.
“Coming to the baby group at Claire House was amazing. I could be around other parents who were like us in a safe environment. I didn’t feel quite so alone
“Luca doesn’t do well with new people. A lot of the time, he knows he’s going to be poked and prodded at appointments so he gets upset or makes himself sick.
“Coming to Claire House, he’s learnt it’s a safe and lovely place.
“When we first went to the baby group, he would just stay by me and wouldn’t get his feet painted.
“But he got used to seeing other babies getting involved and one day he just put his foot out to have it done. It meant so much to see that.
Luca now attends the hospice’s Stay & Play sessions and has regular time with Laura from the physio team in the hydrotherapy pool at Claire House.
Laura says: “I first met Luca at baby group and since then I’ve worked closely with him in aquatic therapy sessions.
“We had to work to build his confidence in coming in the pool with me. Initially, he would cling to mum but he’s so confident now and loves being in the water.”
“For me, it’s lovely to watch Luca play and enjoy himself,” says Vicky.
“It is rare for me to get those moments away from Claire House.
“I always have to be mum and carer, but when I come to Claire House, I can just see Luca being Luca.”
Being in the hydrotherapy pool helps with Luca’s circulation because the water is warmer than usual swimming pools and is great exercise.
“Luca would never have been able to go swimming if it wasn’t at Claire House. Public swimming pools are just too cold for him and his body would have to work too hard to warm back up again”, explains Vicky
“For someone who has half a working heart, Luca just loves so much. He loves life and has so much energy, he just wants to do everything from the moment he wakes up.
“But Luca gets tired easily. He’s a typical toddler and doesn’t always want to be carried, but he can become out of breath when he walks and even turns blue.
“We have to manage so many aspects of his life because of that.
“He uses a wheelchair at preschool for distances and we take a pushchair out with us. This is hard for him as he sees other children and wants to run after them.
“But at Claire House, he sees children who can’t run like him, others in wheelchairs, and he seems so comfortable.
“For me, I get to speak to other adults at Claire House who just understand and that’s so important. After Luca’s time in the pool, I talk to Laura while Luca enjoys a well-deserved cake.
“Many others just look at Luca and think he looks like a normal toddler. Until he starts walking and gets out of breath, they don’t understand how poorly he is.
“But I don’t get that at Claire House. They know, they understand and are there for us.”
Because of his condition, Luca will need more surgery. Claire House will be there to support the family however and whenever they need them.
“We don’t know what the future holds for Luca and how we might need Claire House. We might need respite or some of their services, but I know they are always there,” says Vicky.