Meet Arthur

Arthur attends our Children’s Services, where the team support him and his family through regular care.

Mum, Charlotte, says Arthur began visiting Children’s Services at just two months old and now benefits from daycare and play as therapy where he has opportunities to play and develop while receiving the support he needs.

Arthur has hypoplastic left heart syndrome – a congenital heart defect where the left side of the heart does not develop properly. He underwent open heart surgery at just three days old.

Charlotte said: “Arthur is now 13 months old. At my 20-week scan we were told there was something wrong with his heart and referred to see a consultant who then referred us to Birmingham Women’s and Children’s Hospital. It was there that Arthur was diagnosed with hypoplastic left heart syndrome.

“When we got his diagnosis, we were in shock. We’d spent so much time imagining what our lives would look like once Arthur was born and it felt like that was taken away from us in an instant. It took a long time to process everything we’d been told and I wondered so many times was it something I’d done or could I have done anything to prevent it, but there wasn’t. Despite being told multiple times that 40 per cent of children with this condition don’t make it to their 5th birthday, we knew that positive thinking was the only way we were going to get through it.

“We were first introduced to Children’s Services when Arthur was about two months old and they’ve been incredible ever since – not just with Arthur but with the whole family. We’ve been to family events, Arthur regularly goes to the hospice for daycare and he attends play as therapy every month.

“After Arthur’s diagnosis I was worried about taking him to places where there would be a lot of other children in case he got poorly, but that worry was taken away at Dougie Mac as we knew children didn’t attend if themselves or anyone in their family were poorly so it’s always felt like somewhere safe where I can take him and he can play with other children. He just loves going.

“Children’s Services have also been amazing with my older two children. They’ve both attended lots of sibling clubs and trips, and my eldest son has had extra support with someone from Children’s Services going to his school to do 1:1 sessions with him when he was struggling with everything going on.

“The care we’ve received from the hospice has been invaluable. The staff are all amazing – not only with Arthur but with myself and they always ask how I and my family are doing and if we need any extra support.

“Being a parent to a child with a disability can be very daunting and very lonely as, until you’re in that situation, it’s impossible to understand the impact it has on the whole family. Children’s Services has allowed us to connect with families who are on their own journey but can also relate to a lot of how we are feeling. We’ve made great friends in the short time we’ve been there who we now see outside of Children’s Services.

“Dougie Mac have taken one of the hardest times in our lives and made it so much easier for us to deal with and I’ll forever be grateful to them for that. There are no words to describe how incredible this service really is.”