12 year old Charlie was supported with a symptom management stay at Naomi House & Jacksplace following hip surgery. This helped in assessing and managing his pain, as it became clear that he was still in some discomfort on discharge from the hospital after his surgery.
Charlie (known to his family as Cheeky Charlie) lives with his mum Dee, his dad Steve and his older brother Jack.
This is Charlie’s story, told by his mum Dee.
From birth we have always called him Cheeky Charlie. He’s just got the most beautiful cheeky personality. He’s adorable and laughs at all the things that he shouldn’t laugh at! We gave him that name when he was a couple of days old and he has grown up with it. It suits him to a tee. When Charlie’s not poorly he’s just the most fantastic, happy child to be around and he’s always smiling and laughing.
Charlie wasn’t breathing when he was delivered after an emergency caesarean. He was resuscitated before being placed in the Neonatal Intensive Care Unit (NICU) under one of the cooling blankets. We were told that Charlie had widespread brain damage and it was made clear to us that we probably wouldn’t be taking him home.
There came a point when all the machines had to be turned off and we were to say our goodbyes. But we waited and waited and he just carried on breathing. During that first night we were convinced that we were going to lose him, but by the next day he was still going. He was a little fighter.
They made it very clear to us that Charlie would have significant disabilities and though it was shocking at the time, we have come to terms with it now. We have realised that Charlie is Charlie and we can’t imagine him any other way.
Charlie can’t walk or sit by himself and is a full-time wheelchair user. He is not able to talk, but has his own language which he understands and can get frustrated when other people don’t understand him.
Although Charlie loves food, he can only eat small amounts and so he is fed via a tube directly into his stomach. He can see light and dark and the different colours, but he is registered blind; and beyond that we’re not entirely sure. We have to do everything for Charlie, 24 hours a day. He has epilepsy, and very severe dystonia, which is a movement disorder, and because of that he finds it very difficult to sleep unless he has medication.
Charlie has scoliosis and because of his dystonia, he’s had hip surgery three times. We are hoping that once he is fully grown it might not be such an issue. He really does have a tough time and I think he is a lesson to us all on how not to moan about the smallest things in life. I think it has changed the type of people we are and our whole outlook on everything. We always see the positives in Charlie.
Charlie can have the worst of days but if he gets to the end of the day and he has still got a smile on his face then that’s all that really matters to us. Charlie enjoying life is our top priority.
A couple of years ago, Charlie’s dystonia became really bad. It could have been due to his growth or an aspect of his health. It was a really hard time for us all, but the team at Naomi House & Jacksplace were brilliant. I brought him in to the hospice a few times and it made us realise how good the doctors there are, they are so helpful and supportive.
Early in 2024, Charlie had the metal plates from previous surgery removed from his hips. A major challenge for Charlie is that his dystonia is severely triggered by pain, so to help manage this after his surgery, he had a symptom management stay at Naomi House & Jacksplace. The team monitored his pain and the hospice doctors, Dr Tim Warlow and Dr Kate Renton, wrote a symptom management plan to increase his medication as he needed it. This is something that we can’t do at home and being at Naomi House & Jacksplace made his recovery much quicker. There have been times when we’ve been discharged from hospital and then found ourselves trying to get him admitted again because he is in so much pain.
It's harder to manage Charlie at home after his surgery. You need an extra pair of hands to move him and if you try to do it on your own, you might hurt him. At Naomi House & Jacksplace they’ve got those extra pairs of hands.
When Charlie was at Naomi House & Jacksplace after his surgery, I stayed with him throughout, but because the whole team were there to help with his care, I could get regular breaks away. As Charlie was in a lot of pain it meant that he was sad and upset a lot of the time which makes me get upset. If I’m at Naomi House & Jacksplace can have five minutes to step away, take a deep breath, think about it all and then come back again. When you’re at home on your own you don’t get the chance to do that. The doctors reviewed Charlie’s medication on a daily basis and I was able to speak to them regularly. Charlie reached a stable point and we were able to go home and manage him after that.
When we went home Charlie’s pain was a lot more level and we went back to having our usual hospital reviews, but it had been a break for all of us. It takes weeks to get back to normal after surgery, but we were certainly at a point where we could cope with him.
Every child experiences and expresses pain differently. For children like Charlie, understanding how they communicate this distress so that we can identify the cause and assess the effect on other symptoms of their condition, such as seizures and muscle spasms, can be a real challenge. It often takes time and detailed assessments to find the right combination of medications and support to reduce pain and anxiety for the child and ensure parents and carers have the right support. Such assessments are almost impossible in a busy, noisy hospital environment, but the calmer atmosphere at Naomi House & Jacksplace, alongside the expertise of a wide professional team – doctors, nurses, carers and physiotherapists – enables a detailed, holistic approach and the best opportunity to address the needs of the whole family. They can then return home with appropriate medications, care plans and community support.
We’ve loved Naomi House & Jacksplace since the first time we visited. Sometimes I stay there with Charlie and it’s nice to be mum and not carer. Sometimes he stays without us and it gives Steve and me the chance to spend some time away together, whether it’s a night or even just a day. I trust the care staff to call me when they need to ask questions or tell me anything important.
I can trust the staff at Naomi House & Jacksplace and that is so important to me. It is very hard to do when you have a child who can’t communicate and tell you about their day.
I know the team at Naomi House & Jacksplace care for Charlie really well, so I have no reservations at all about leaving him there. I know that he is being looked after and there is nobody else who can do that for us.
Charlie and I often stay in the February half term. I meet up with some other mums whose children also come to Naomi House & Jacksplace, we call it a bit of a “mums’ break”. It’s lovely to be able to go and relax together. There is a calmness about the boys when they are together and it’s great for the mums to have the chance to meet up, too.
When we go to Naomi House & Jacksplace, we love going in the hydrotherapy pool and the sensory room. Charlie loves all the different activities that the Play and Activities Team provide. He is a people person and loves having different noises around him.
We had preconceptions about Naomi House & Jacksplace. We thought it was just for end of life care, we didn’t know about all of the other amazing things that come with it. But now I see it from the other way round, from my child being able to go there and have a wonderful time in a change of environment with different people all while receiving expert care.