Reuel’s story: “At Little Havens, we don’t have to fight”

This Children’s Hospice Week, we’re shining a light on how hospices like Little Havens are there for children like Reuel. This is his story, told by mum Charlene…

Reuel is seven years old and lives at home with mum Charlene, dad Prince and his older brother Moses. Charlene had a normal pregnancy, and Reuel was born on 2 September 2016.

Reuel had issues being sick and Charlene pointed this out to midwives during her checks, but they told her that was normal with a caesarean birth. It wasn’t until Mother’s Day in 2017 that she noticed something wasn’t quite right. They’d gone out for lunch together, with Charlene carrying him in his baby sling. She noticed his fingers were twitching but thought he was cold. When they got home, she gave him a quick wash but realised his body had stiffened, and he was having a full-blown convulsion. Charlene thought it was a febrile convulsion, which is common in young babies. But it happened the following month, lasting much longer this time.

The diagnosis changed everything

After scans and tests, they were referred to Great Ormond Street Hospital, where he was diagnosed with microcephaly, where a baby’s head and brain is smaller than expected, which would affect his development. He was also diagnosed with epilepsy, and his reflex had worsened.

Charlene says, “Nothing was picked up at his six-month check. No one noticed these early signs. Reuel has been through a lot, including an eight-hour hip surgery. His medication affects his sight, so we don’t know if he’s blind. But he’s a fighter. I call him my Warrior Boy. He’s so brave.

“With the amount of times Reuel has spent in hospital, ambulances coming to the house, it’s been so traumatic for him, and us, especially Moses. In fact, at one point, Moses lost his speech and needed extra help with his development. Our whole family dynamic had to change.

“We have grieved and continue to do so. Even though Reuel is alive, we’re grieving the child we thought we were going to have. We didn’t plan this. It puts a strain on us all.

“We hardly do things together as a family. One of us will be with Reuel, and the other will take Moses out.

Little Havens is my velvet blanket

“That’s why places like Little Havens are very therapeutic. Cathartic, in fact. My velvet blanket – when we come here, we have feelings of peace, serenity, comfort. Everyone understands us. I have a strong support circle, but they’ll never understand what we’re going through. Even though my child has these complex conditions, we are still important. Precious. Little Havens reinforces that.

“Summer is a perfect example. We couldn’t really go anywhere as a family, but we did come to Little Havens. The gardens are beautiful, and Moses always dashes off to play. I remember arriving one day and having a cry in the garden. No one was judging me.”

Charlene has reservations about coming to Little Havens at first. “Our Community Nurse referred us. I thought she was patronising us. Bloody cheek! Hospice – it was that word. When she said Little Havens, I thought that sounded lovely. But when the word hospice was added, my thoughts went to oncology, death. I did have negative thoughts.

“It was the roast dinner that sold it for me. I had second helpings! It was peaceful and I spent time chatting with other mums. I thought ‘it’s not bad, actually.”

Feeling safe and secure

“It’s the feelings of safety and security that make this place so special. It makes you vulnerable, having a child who needs so much care. He can’t talk, but we can tell he’s happy here.”

Reuel is cared for at home by Little Havens, too. “Our carer is flexible and has taken the time to get to know Reuel. She will do everything he needs and wants, from personal care to sensory play. She’s incredibly professional, and her involvement has had a positive impact on us all.

“You can tell she has genuine compassion for the children she cares for. She’s a breath of fresh air. It’s the only time I get to go to the High Street or make an English breakfast, for example. I can give Moses my full attention. Every single month, he knows he has Mum to himself and plans ahead to the visit.”

Our hospice has helped me become an advocate for my son

Charlene’s background means she had insight into the care she should have been receiving. She was a maternity nurse caring for women when they leave the hospital. In the last few years, she has studied to be a counsellor and graduated with a qualification in educational needs and disabilities studies. “I wanted to enhance my knowledge as an advocate for my son. There is so much information – the legislations, policies, lesson plans. It was heavy, but I enjoyed it.

“I have to fight for a lot of things in Reuel’s life. If you don’t know or ask, it’s difficult. I was at the end of my tether when I was referred to Little Havens. I shouldn’t have reached breaking point to get here, so more healthcare professionals should spot this and refer families earlier.

“But they’ve helped to teach me perseverance, resilience, how to write emails, fill in forms and what I should be asking for in meetings. Before, I would have avoided confrontation, but now I stand my ground for what Reuel needs.