Liam’s story: “I can see my house from the hospital, but rarely get there”

Mum Zoey has lived with her son Liam and daughter Scarlet in hospital for the past year. The support of their local children’s hospice Claire House has helped the family through an impossibly hard few months.

Liam is six years old and has an undiagnosed condition. He has intestinal failure, so requires tube feeding 24 hours a day, and he’s also on the autism spectrum. But Zoey says he’s a very “cheeky chappy”, and even though he can be very blunt – has no filter – and gets quite distressed, he is really loving. And he absolutely adores trains!

When hospital is home

Lockdown has been particularly difficult for the family. Liam has been in Alder Hey hospital for a whole year – at first with sepsis, and since then with chronic pain. They live in Liverpool, and Zoey moved closer to the hospital so she could go home more often. But they’ve spent most of the time since in hospital. “You can see my house from the hospital” says Zoe, “and yet I rarely get there.”

With no family support, Zoey’s eight-year-old daughter Scarlet has also been staying in the hospital with her and Liam, and hasn’t been able to go to school. Zoey says “Every day is different with Liam, but we basically just sit in the room all day with him. He doesn’t really like to play with his sister, so I have to try to keep them both entertained.”

A big beaming smile

Liam has sensory issues which mean he can’t stand wearing clothes. But when Katy, an Occupational Therapist from Claire House visited him in hospital, she realised that he liked the feel of having something heavy on him, so she brought him a weighted blanket. At first, Liam told her to go away but they placed the blanket by his feet. “He slowly pulled it up over his legs, then tummy and under his chin” recalls Zoey, “and he had a big beaming smile on his face from ear to ear. He hadn’t smiled like that for a while.”

“Liam doesn’t accept many people into his life but he really has accepted Katy. She’s been an absolute angel; she’s helped him in so many ways and given us ways we can help him as well.”

Claire House

On one of the rare occasions the family were able to leave the hospital last year, they went for a stay at Claire House. Zoey says “One of our special memories from the last year is a stay at Claire House. We had a lovely time away from the hospital. It was nice to see Liam be free from the ward. It was nice to see him be just a happy little boy and not sat in a hospital bed. He became a child again.”

“There was a massive train track in and it was definitely a winner! He spent hours building the track. It went under his bed and everywhere.”

Having the hospice staff look after Liam meant that Zoey could relax. “I wouldn’t leave Liam on his own in hospital and I get very few breaks. During our stay at the hospice I got a few full night’s sleep, which is very different to how things are when I sleep on the ward.”

Their stay at Claire House also gave Zoey the chance to spend time with Liam’s sister. “My daughter, Scarlet, was very young when Liam was born and they’ve spent the majority of their lives in hospital. At Claire House we got to spend time together. We went into the pool and did lots painting and drawing. It was nice to be a mum to both of them; rather than a nurse to Liam and constantly telling Scarlet I am busy.”

“As for the future, I am looking forward to just being able to go home from the hospital and Liam being able to go to Claire House. I just want to have a bit more of a normal life.”

Katy, the occupational therapist

“I am an occupational therapist and part of the team who support Liam. I help children participate in daily life activities to improve their well-being and reach their potential.

“When families are in hospital, our team provides emotional support and offer extra services, like physiotherapy, play and complementary therapies. We also do regular visits and attend clinical meetings, so we can work closely with hospital staff.

“We can’t fix what families are going through or make their child better, but we can support them through it and be there for them. We also help families prepare for when their children leave hospital.

“With all the families in Alder Hey, you see them going through an awful time and getting to build up a relationship with them is a privilege. You can build on that and support them when they leave hospital.”