Tomas was poorly when he was born, and he was later diagnosed with CCHS, for which there’s no cure. He needs support to breathe, so his family are on alert 24/7. They all come to us together for mini-breaks, and we take Hospice at Home out to them so our nursing support can relieve his family.
Leah and Jonny’s baby Thomas was born in February 2014 – and it soon became clear that their precious baby was very poorly indeed. After spending his first 6 months in hospital, Thomas was finally diagnosed with congenital central hyperventilation syndrome (CCHS), a lifelong condition which causes severe breathing difficulties.
Thomas’s parents were told there was no cure, and that Thomas faced a very uncertain future. As Leah explains: “He has to have his ventilator to hand at all times, and he needs it whenever he’s asleep – even just having a nap. We’re up constantly throughout the night, repositioning him to help him breathe. You’ve got to be alert 24 hours a day, and even then there can be times when you can’t do anything. It can be exhausting, and you can feel really helpless.”
Discovering Forget Me Not Children’s Hospice
It was just after Thomas’s first birthday, in March 2015, when the family found out about the support we offer. “At this point we really needed help," remembers Leah. "But I was a bit apprehensive when I heard the word ‘hospice’: I didn’t know what to expect. But after just one visit, all my preconceptions were changed forever.”
Having a much-deserved early break
Shortly after their initial visit, Leah, Jonny and Thomas stayed over at Russell House for 2 nights. “It felt like we’d had a two-week holiday!” says Leah. "We were all so well looked after, and Thomas absolutely loved his time there – he still does, every time we visit. It's the thought that goes into every last detail that makes it such a magical and truly irreplaceable service to all of us.”
We bring our services out to Thomas
As well as overnight stays, Thomas and his family use our Hospice at Home
care. “It’s fantastic,” says Leah. "We live in the Wakefield area, so travelling to the hospice in Huddersfield isn’t always ideal, particularly for day care. But thanks to Hospice at Home, Thomas can still get high-quality care in the comfort of our own home.”
Being able to trust
When a child has a condition like Thomas’, it can be very difficult to hand their care over to someone else. Anything could happen, you don’t know what they’d do if it did, and you wouldn’t be there. But Leah never has to worry: “With Forget Me Not, it’s different. We can leave Thomas in their very capable hands and enjoy something we’d never otherwise get – time to ourselves."
Support through the bad times
Leah lost her dad earlier in the year. “It was a difficult time, but Forget Me Not really helped me through it. They looked after Thomas when I needed to be elsewhere, and looked after him again so Johnny and I could go to the funeral. It’s during difficult times like that when you realise what a great support the hospice can be. It gives us such peace of mind, knowing they’re just a phone call away.”