Freddie becomes first in UK to benefit from new state-of the-art ECMO technology

Freddie, aged 3 in Cardiff.

A three-year-old boy, who fell critically ill after contracting multiple viruses, has become the first patient in the UK to benefit from a new state-of-the-art Extracorporeal Membrane Oxygenation (ECMO) technology, provided at the Bristol Royal Hospital for Children (BRHC) Paediatric Intensive Care Unit (PICU).

Freddie Julian, who lives in Brecon, Wales, was taken to his local hospital by worried parents, Steven and Vickie, on 20 June 2024 after a virus appeared to be getting worse.

Alongside a high temperature Freddie’s arms and legs were freezing cold, his heart rate was erratic, he was not eating or drinking, and he was struggling to stay awake.

Freddie’s liver was enlarged, and there was fluid around his heart. He was immediately transferred to BRHC PICU where the paediatric ECMO team would be able to put him on their new ECMO device.

The new state of the art ECMO machine that supported Freddie

The University Hospitals Bristol and Weston NHS Foundation Trust paediatric ECMO team was ready and waiting for Freddie however, BRHC team were able to stabilize him with a temporary pacing wire first.

Freddie had contracted four common childhood illnesses, including pneumonia and slapped cheek syndrome, and had developed viral myocarditis (a viral infection damaging the muscle and conduction tissue of the heart) which was later diagnosed at Bristol Royal Hospital for Children.

Despite several days on full intensive care life support, Freddie was not getting better. His kidneys and liver were failing, he was retaining fluid and his heart was getting weaker and could not get oxygenated blood to his vital organs.

He was placed on the latest version of ECMO, plus a kidney filter for five days, the first patient in the UK to be treated with this new ECMO technology. This gave Freddie’s heart a sufficient period of rest whilst the ECMO machine did the work of his heart and lungs outside his body, for him.

ECMO supports patients with cardiac or respiratory problems, taking over the job of the heart or lungs, and can help both organs at the same time. This gives these organs a chance to rest, and hopefully recover and start to work as they did before.

A form of extracorporeal life support, UHBW have been providing ECMO support for children for over a decade and recently purchased two new state of the art ECMO devices for Bristol Royal Hospital for Children’s Paediatric Intensive Care Unit.

Vickie, Freddie’s mum, said: “It was the worst experience of our lives. The thought of losing your child, it was all so scary. Freddie was a happy, healthy three-year-old before this. He was speaking, racing around on his balance bike and playing with his sister. He hit all his developmental milestones, and we just had no expectations he would become so seriously ill.

“He was so unlucky to fall so poorly with the viruses attacking his heart, however he is incredibly lucky to still be with us which is down to the ECMO support he received.

“We were shocked with what was happening, but the team on PICU in Bristol were incredible from the moment we arrived. They are surrounded by the sickest children in the South West and South Wales but they were so reassuring and kind, even when explaining how sick Freddie was to us. They kept us so well informed and we really understood what was happening with Freddie’s care due to them explaining every step. We are so grateful that Bristol Children’s Hospital have such a professional team and can provide the lifesaving ECMO support to children when they need it. Without that, no doubt we would have lost our son.”

Freddie's sister Millie visiting him in Hospital 

Dr Tom Jerrom (Paediatric ECMO Lead for University Hospitals Bristol and Weston NHS Foundation Trust) said “Placing a child on ECMO support and their ongoing treatment requires the specialist skills and expert care from every member of the large multi-professional paediatric ECMO team. The team includes; PICU nurses and doctors, ECMO nurse specialists, cardiac surgeons and theatre teams, cardiac anaesthetists, perfusionists, cardiologists, physiotherapy as well as other support staff who all work incredibly closely together to provide lifesaving ECMO support 24 hours a day, 365 days a year.

“ECMO support comes with risks and is only used for the sickest children when other treatments have failed or if the child is deteriorating too quickly. Sadly not every child will benefit from or can be saved by ECMO support. Cases such as this are however the reason that we do the jobs we do and we are all delighted so see Freddie’s continuing recovery.”

Freddie is now recovering at the University Hospital of Wales in Cardiff where he is closer to his family, including five-year-old sister Millie.

He has a long road of recovery ahead of him after such a long time on life support and being on ECMO and is now undergoing extensive rehabilitation.

Vickie, who works as a lawyer for a local council, added: “When he first came off life support Freddie had lost his speech, was extremely weak and could no longer walk but with the help of therapy teams in Bristol and Cardiff he is already beginning to babble and can sit up independently again. We are so thankful to the medical team in Bristol who made the right decisions at the right times, resulting in our little boy still being with us”.

The new ECMO equipment is more portable than the version it replaces, and has the added benefit of giving the ECMO team early warning signs when the patient’s condition starts to change or if there are signs that certain complications are developing.

Many of the paediatric patients in need of ECMO support have had cardiac surgery for complex cardiac problems, or have undiagnosed heart conditions, have cardiomyopathy or a viral or genetic condition which is affecting the heart.

To deliver this service for the first time in the UK using this new technology UHBW’s paediatric ECMO team have had to undergo extensive training and our specialist paediatric ECMO nurses have worked hard to get up to speed on the latest technology.

Dr Rebecca Maxwell, University Hospitals Bristol and Weston NHS Foundation Trust’s Interim Chief Medical Officer said: “It is wonderful to hear Freddie is recovering so well. Being able to offer paediatric ECMO for children across the South West and South Wales is an important service, and offers potentially life-saving treatment for some of the sickest children.

“Our colleagues at Bristol Royal Hospital for Children have worked incredibly hard in order to be able to offer this new state-of-the-art version of ECMO. It is delightful to see Freddie getting stronger as he recovers closer to home.”

Freddie on the road to recovery at Children's Hospital for Wales, after treatment at the Bristol Royal Hospital for Children