The number of children living with life-limiting conditions is on the rise in Wales and we desperately need to ensure that we are looking after them, and their families, in the way that they deserve.
In the years between 2009 and 2019, the number of children living with a life-limiting condition rose by almost a quarter. If this rise continues, which it is likely to with advancements in medical treatment, the services that are already stretched and unable to reach every family will not be able to cope.
Children diagnosed with life-limiting conditions often have incredibly rare and complex conditions that require expert care. Some children may be among only a couple of hundred people living with the condition in the world.
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There are few words to describe the expertise and compassion required to support families in these situations, but there are "heroes" and "angels" out there who do. In Wales, those people work at Tŷ Hafan and Tŷ Gobaith. They are Wales' only two children's hospices which offer a range of palliative care, respite and fun experiences for families. However, just just 10% of children with life-limiting conditions in Wales access support from these hospices, which are mostly funded through the public's generosity. I spoke to the users of this service about the life-changing diagnoses and how hospices have saved them.
Nerys Davies from Llanwrst considers her family one of the lucky ones for the support that they have from Tŷ Gobaith. When Bedwyr', their second child, was born, Nerys and husband Gavin were convinced something was not right.
"He was too happy, too content," she said. "I actually took him to a baby swim class and they did this thing to put them under water and as I did that and brought him up he started doing this sort of gurgling noise. I was told I was giving him too much attention. I had the whole weekend to process that and I decided 'No, it's not me'. It turned out the gurgling noise was him not being able to swallow.
"Initially when we went to the hospital and found out what it was, you think it is going to be a few months with a diagnosis and treatment and it will be fine, and then we discovered this was a life-long condition."
Bedwyr was diagnosed with a genetic condition called Coffin-Siris syndrome. It causes a significant learning disability and is extremely rare, with just 200 children diagnosed worldwide. For more health stories like this straight to your inbox, sign up to our newsletter here.
Bedwyr is now eight. He is tube fed and has respiratory problems. He also has no language, but mam Nerys said that doesn't stop him from communicating. Caring for Bedwyr is a full-time job, and Tŷ Gobaith is the only place Nerys can leave Bedwyr and know he is in safe hands. Nerys said he goes in for a "holiday" and he gets to have experiences that help him live a fulfilled life.
“It’s the little things you really look forward to that other people can take for granted, like being able to sleep at night, or sit down and eat a meal in peace even if it is just beans on toast, or just to have a cup of tea," she said.
"It’s horrific going without sleep. Bedwyr has always co-slept with me which means I don’t get much sleep at all. If anything happens it is always in the middle of the night. Emergencies and rushing to hospital always happens at 2am in the morning, never in the afternoon."
Bedwyr's brother Gethin also benefits from support from Tŷ Gobaith, who take him out on days out and allow him to do activities that can be more difficult when he's with the family, because it's difficult to go to certain places with Bedwyr's condition. Nerys added: "It is nice to see our children are out in the community and live a fulfilled life and be able to access the same opportunities as everybody else."
Tom is a 29-year-old 'graduate' of Tŷ Hafan, and used their service for ten years as a child. He has a rare condition called intermediate non-kinesigenic paroxysmal dystonic choreoathetosis. This means he suffers with constant and debilitating muscle spasms. The condition usually appears in childhood and can affect people in different ways. Some only have muscle spasms in certain parts of the body but Tom experiences them all over.
He has had a number of treatments, some experimental, for the condition, sadly none have gained the desired results. Due to how rare the condition is - just one in five million people globally are diagnosed with a version - it is hard to predict the outcome of the condition.
Talking about Tom's diagnosis, his mother Debbie Martin, from Cardiff, said: “When he was born, as far as we were aware, everything was OK but when he had his six-week check the GP was concerned that his head circumference was larger than it should be. We were seen at the University Hospital of Wales within 24 hours and told that Tomas had hydrocephalus.
“At eight weeks old, he had to have a device called a shunt fitted to relieve the pressure that had built up. That was the first of many shunts. Tomas seemed to be developing properly and was on his feet by about 18 months but then around the age of two, he started showing some signs that all was not quite right. He had started to have spasms for no reason at all.
“He had many different tests. The hospital consultant was certain Tomas was showing signs of suffering from a neuro-muscular movement disorder called intermediate non-kinesigenic paroxysmal dystonic choreoathetosis, and that this was causing the muscular spasms Tomas was suffering with daily. We have tried several different treatments to help Tomas with these spasms, that can happen anytime day or night. He’s had many different scans and several investigations at Great Ormond Street Hospital, plus a long list of medication over the years.
“He has needed spinal rods due to scoliosis, has had hip surgery to correct a dislocation, but the most difficult and serious was pioneering brain surgery to have an electronic device fitted called a deep brain stimulator, which was done at Frenchay Hospital, Bristol."
The surgery did not have the desired results, but his condition has not prevented him from achieving great things in his life. In 2022, he graduated from the University of South Wales with a first class honours degree in sports coaching and development. He now works as boccia coordinator for Disability Sport Wales, a sport he has represented Wales in as a player.
Tom was first referred to Tŷ Hafan when he was nine, as one of his teacher's at school sensed his parents needed a little bit of support. Debbie said she had the wrong perception of what a hospice was, and didn't' think they would be able to access it.
For Tom, having a place to go without his parents was a chance for him to gain a little bit of independence. He said: "We used to go into together its like going on holiday with your mates. Doing things independently with your mates like going to the cinema or going out."
He would stay there three times a year, and made great friends that he would socialise with outside of the hospice. Debbie said as parents, they also made friends with other parents, and the respite they received was life-changing. She said: "When you care for your chid 24/7, having that little break is massive."
Michaela Turner from Cardiff told me that Tŷ Hafan was a safe place for her and her family throughout her son Cai's life. Cai was poorly when he was born and Michaela and her partner started accessing support from the hospice when he was eight months old. Cai was diagnosed with vena cava syndrome when he was four. Michaela said: "When they first talked about going to a hospice I was like, he's going to die. But when I first went to Tŷ Hafan it was like a home away from home. I could leave Cai there, but there was no one else I could leave him with.
"In 2021, Cai became really poorly. He was in hospital and we made the decision to move him from Tŷ Hafan, I wanted Cai to pass away there. When we took the vent out we didn't expect him to live for longer than a day, but he was with us another six days. We all got to stay in the same room, it was our happy place. He was not just another patient, he really meant something to them."
Michaela was given support by the hospice following Cai's death. Dylan Thomas from Welshpool, whose daughter uses the hospice Tŷ Gobaith in north Wales, was also provided support following the death of his wife six years ago. His daughter Kiera is 16, and before her death, Dylan's wife Teresa was her full-time carer. Dylan gave up his job to take over that role. For the last six years, Tŷ Gobaith has been the only respite he has had: "I am a single parent and I am not getting any help from anyone else. That little bit of rest allows you to do the things you need to do. I trust them with my daughter's life."
He considers himself one of the lucky ones to get the help that he does, but he wishes more people in his situation could. He wants more funding from the Welsh Government to enable hospices like Tŷ Gobaith and Tŷ Hafan to exist.
