Jaxson’s story: Every obstacle and fight is worth it

Jaxson is 17 months old and lives in South-East London with his two siblings, Mum Laura and Dad Jim. Jim and Laura were told that their baby would be born with a congenital heart defect called Hypoplastic Left Heart Syndrome, which affects the blood flow through the heart. As Jaxson developed in the womb, the left side of his heart did not form correctly. No one knows how or why.

When he was born, he had the Norwood procedure, the first of three ‘staged reconstructions’ that surgeons perform to reconfigure the heart and circulatory system. It was a success. The second procedure is usually performed before the age of six months, but a diagnosis of Pulmonary Artery Stenosis – a narrowing of the arteries – changed Jaxson’s course of treatment.

Jaxson then underwent two surgeries, known as Cardiac Catheterisation, or Angioplasty, to try and make his Pulmonary Arteries larger. On the second procedure, he had his shunt and Pulmonary Arteries stented, but became unwell and spent two weeks in PICU: “He was so unwell, we nearly lost him.”

From life-saving surgery to palliative care

Any future surgeries were cancelled as the decision was made that Jaxson’s quality of life would be severely impacted and he would not survive the procedures. The family were also informed that Jaxson had Mowat-Wilson Syndrome, a very rare genetical chromosome disorder.

“We were told in September that curative treatment would stop, and that he would be placed on a palliative journey. And the truth is, we just don’t know how long we will have with Jaxson. It could be tomorrow, next week, or he could live to 15. There is absolutely no way of knowing”.

“That is why every single minute is important to us. And so we spend every day giving Jaxson the best possible life that we can. Which is why, when we face red tape and bureaucracy trying to access support or equipment, it can be incredibly frustrating. I don’t want to spend time emailing, calling or chasing people, I just want to be having fun with my son.”

Towards the end of 2023 the family met their local paediatric palliative care team: “When we were told there wasn’t anything else they could do surgically for Jaxson, we were introduced to the palliative care team under the specialist Hospital. While they have helped, we haven’t yet felt like we are supported fully. We feel isolated. We feel as though we are at a point of needing that extra support from somebody.”

Struggling to access care they should be getting

Before Christmas 2023, Jim pushed to start an Advance Care Plan and an ambulatory directive as he was terrified that if something happened to Jaxson during the festive period, they would feel totally unprepared. A directive was completed and sent to their local ambulance service, but when the family needed to call an ambulance in March 2024 because Jaxson had developed a fever and had a convulsion, the paramedics arrived but they were not aware of the directive: “It just felt like a massive waste of time.”

It was at that point that Jim started to do some research and came across the NICE guidelines for End of Life Care for Infants, Children and Young People with Life-limiting Conditions: “Things just don’t seem to match up. There seems to be a disconnect between what should be best practice, and what is actually being done.”

The family were referred to their community nursing team but are waiting for an initial visit: “We don’t know what is taking so long. They were very dismissive of offering us help, but we really just need the support to give Jaxson the support he needs for dignified end of life care.”

Needing actions, not words

“One of my biggest frustrations recently has been accessing vital syringes that we need to administer Jaxson’s oral medications. They are no longer provided by the cardiology team that we visit every two weeks, but nobody else was able to provide them for us. Some of his more powerful meds are measure in small quantities and so I can’t just use a measuring cup.“

The family were advised to re-use the syringes, sterilising them between each use: “But the numbers are starting to fade and any inaccurate dosage could be fatal. They don’t administer the medicine as smoothly once they are reused, which can exacerbate Jaxson’s reflux.”

Over the course of seven weeks, with countless calls and emails made, the family were still no closer to sourcing more syringes: “It is a constant battle, but it shouldn’t be. We tried the health visitor, pharmacy, nursing team, continuing care team, GP, Palliative Care and we even attended A&E. These meds are vital, it’s pain and symptom management. We didn’t know what to do.”

In the end, it was Jim’s speech at an event in Parliament which offered him and his family a glimpse of hope. After hearing his moving speech, NHS officials began discussing a supply of syringes, with his local GP. “I am grateful for the help, but it shouldn’t have taken me going to an event in parliament for this to happen, and it’s not a long-term change to the system or to the other care Jaxson is supposed to have. There are still so many families like mine who aren’t getting the support they need, who don’t have the opportunity to go to parliament and speak directly to MPs.”

No emotional support

Since being unfairly dismissed from his job at the end of 2023, when Jaxson was in Intensive Care, Jim has been caring full-time for Jaxson at home: “It’s the hardest job I have ever had in my life. The intensity of caring, it’s 24/7 – we always have to watch him. If his stent blocks, it’s too late. In the day, he is never left alone. I always have an eye on him. Always. I wake throughout the night to the fear we might lose him.”

“There hasn’t been any sort of emotional support from the care teams involved, for us as parents or even for our wider family, and that is a huge part of palliative care. We worry that our advocating for Jaxson to get the care he is entitled to is seen as problematic and that is such an awful feeling when all you’re trying to do is protect your child and give him the best quality of life. I don’t want my frustration to be seen as aggression or interference, I just want my son to get the care he needs and deserves, so I can focus on spending time with him and building more lasting memories”.

Angels in uniform

“The Demelza Hospice are true angels. Jaxson has gone for some respite care there, and we visit for stay-and-play sessions, hydrotherapy sessions and they have come to the house a few times to support us, too. We’ve been offered practical help, when we first moved and some financial assistance in getting some needed equipment for Jaxson, too. It’s a sanctuary of knowledge, information and care, at such an uncertain time”.

The family took part in the Christmas light trail last year and met Santa. Without Demelza, Jim says they would be lost and completely on their own. “I feel like I kind of stumbled into this world, and now it’s where I find myself, trying to get the very best care we can for Jaxson. I worry about the future. I look at the difficulties with syringes and I think, what if in a year we need another piece of equipment or a wheelchair? Right now, it just seems impossible.”

Right now the support that children like Jaxson and their families are offered depends on where they live. This is unacceptable and Jim is writing to Rishi Sunak to tell him that – if you’d like to show your support for Jaxson please add your name to Jim’s letter today.