Chichester dad cycles 100 miles for hospital which saved son's life

A Chichester schoolboy is looking forward to studying for his GCSEs after an emergency operation saved his life.

Oscar Neal was diagnosed with chronic kidney disease in 2009 when he was only two years old.

One day he woke up with swelling around both eyes.

"I’m an emergency medicine doctor and I suspected possible nephrotic syndrome which is often controlled by high dose steroids," said his dad, David.

David and Oscar’s first hug after their transplants

"My wife took Oscar to our GP who urgently referred him to our local hospital children’s ward.

"His urine was tested and showed Oscar’s kidneys were leaking excessive protein and his blood tests showed a very low Albumin (protein) level.

“Nephrotic syndrome was confirmed and he was then admitted to hospital for the first time and deteriorated further."

In just a matter of days, further swelling developed all around Oscar's body, with the abdomen and legs being the worst affected.

Oscar's first transplant games were in 2018, in Birmingham, within a year of his transplant

Oscar was one of about 10 per cent of people not to respond to high dose steroids.

David said the family 'didn’t know then how serious this would become'.

Southampton Children’s Hospital then took over the care of Oscar as the regional Paediatric Nephrology centre.

David added: “We persisted with high dose steroids for at least four months, then introduced other immune-suppressants in an attempt to bring the kidney disease under control.

After Oscar's mum and dad were tested, David was found to be the closest match. After multiple tests at Guy’s and St Thomas’ Hospital in London, it was confirmed that he would be a suitable kidney donor.

“While we saw some improvement, he never went into remission and he was often ill with one viral illness after another. He required three kidney biopsies which confirmed the more serious kidney disease, called Focal Segmental Glomerular Sclerosis.

“With Oscar not responding to treatment, we learnt that his kidney disease would inevitably progress to kidney failure within five to ten years, when he would need dialysis or a transplant to stay alive."

This end stage kidney failure developed in 2016. Oscar was then urgently placed on haemodialysis three days a week at Southampton and his family 'started to prepare for a possible kidney transplant'.

“However he became really unwell at that time and had to be admitted to the G4 nephrology ward due to severe pneumonia, and he required a chest drain and several months of antibiotics. He also developed a large fluid swelling around the heart and required this draining to help the heart function better.

“These four months in hospital were the hardest but that’s when we really appreciated the support and expertise of the nurses and doctors looking after Oscar, spending days on end in the hospital, and often four to five hours per haemodialysis session.

“Oscar required haemodialysis for a year before he had recovered enough to then have his diseased kidneys removed in preparation for a kidney transplant."

After Oscar's mum and dad were tested, David was found to be the closest match. After multiple tests at Guy’s and St Thomas’ Hospital in London, it was confirmed that he would be a suitable kidney donor.

“It was August 2017 when Oscar, now aged 10, received my kidney," David said. “Thankfully the operations went well and there were no significant complications.

"I spent three nights in hospital, and the first thing I wanted to do when I was discharged was, of course, visit Oscar.

“We were so happy to see each other again and we gave each other a big hug even if we were both suffering some pain.

"Oscar needed to remain at Evelina Hospital for around ten days before being transferred to Southampton Children’s Hospital."

The first year after the transplant was 'very demanding', as Oscar had to have frequent blood tests, careful reviews and adjustments of many of his long term medications.

David said this was initially every day for the first few weeks then several times a week for 'many more months'.

"By the end of the year this was eventually down to once a month," he continued. "Over the years, but particularly whilst Oscar was on dialysis and in the first year after the transplant, we spent much time travelling the 80 miles round trip from home to Southampton Hospital.

“After Oscar’s transplant, he needed something to look forward to, and the paediatric nephrology team encouraged him to participate in the British Transplant Games as part of the Southampton team, the Organators. It wasn’t something we’d heard of before, but it really helped to encourage him to get active.”

Southampton Hospitals Charity raises funds for kidney transplant patients to participate in the British Transplant Games, which are held in a different city each year.

Oscar's first transplant games were in 2018, in Birmingham, within a year of his transplant.

David said: "It was a really special event.

“It was so helpful to meet other parents and children who had been through a similar experience, or worse.

"It helped us to come to terms with everything we had had to face in the previous years and it was inspirational to see other children doing really well and being active.

“The second time we went to the Transplant Games in Newport, South Wales and Oscar competed in a timed cycling race. He really went for it, and ended up winning a gold medal in his age group, cheered on by some of his team mates and parents."

Oscar has now chosen PE as a GCSE option for next year.

David said none of this would have been possible without the care Oscar received in Southampton and London.

He joined a group of doctors, nurses, parents and kidney donors cycling from London to Southampton on Saturday (July 3), to 'mimic the journey' taken by the children receiving transplants and raise funds for the Southampton Transplant team.

Speaking before the challenge, David said: “We are covering 100 miles, so it will be challenging, especially as I need to keep hydrated as I only have the one kidney now."

To help send a team of children with transplants to the British Transplant Games in 2022, please donate here.