Boy's death after 'last chance experimental treatment' at Great Ormond Street was 'accident'

Paul Wollmann's family said they were grateful to the hospital after exhausting conventional treatments

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The death of a terminally ill German boy who took 'last chance' experimental treatment in the UK was an accident, an inquest as concluded. Paul Wollmann, 13, of Hagnau am Bodensee, South West Germany, was diagnosed with acute lymphoblastic leukaemia in October 2020 after a healthy childhood spent swimming in Lake Constance and skiing with his parents in the Alps.

Computer whizz Paul was "absolutely enthusiastic about tech", his parents Heiko and Marion wrote in a statement read to St Pancras Coroner's Court on Wednesday (August 2). The court heard how the youngster was able to program the family's dishwasher and dreamed of converting a Mercedes Unimog and driving it around the world.

After his "shock" diagnosis, conventional treatments put him on the road to recovery in July 2021. But sadly Paul relapsed in June 2022 and became so weak he had to use a wheelchair and could only walk small distances, his parents told the court.

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"He was always very positive and always motivated to make the best of the situation," they said. "When the terrible knowledge came last November there would be no cure for him, he was the first to try and cheer up."

Paul tried chemotherapy, new drugs, and the latest treatments available in Germany, but eventually the family was left with no option but to seek experimental CAR T-cell therapy available at Great Ormond Street Hospital in Camden. "He was proud and happy to get the chance," Paul's parents said.

But the treatment, which made headlines in September last year, comes with risks which were spelled out by doctors to the Wollmann family. They include cytokine release syndrome, a condition that normally develops when your immune system responds too aggressively to infection and can lead to organ failure.

The therapy can also cause neurotoxicity, causing fits and decreased consciousness, though it remains unclear exactly why this happens. "I said given Paul had greater than 80 per cent leukaemia cells, the risk was significant and would likely need paediatric intensive care," Dr Robert Chiesa, a consultant in bone marrow transplantation, wrote in his report.

Faced with a terminal diagnosis, Paul and both his parents signed consent forms for him to undergo the treatment. "Paul's parents understood the benefits and burdens of this experimental approach and said they wanted to take part in the study," Dr Chiesa added.

On February 8 this year, Paul had his CAR T-cell infusion and a fever developed within three days. This was resolved with drugs by day nine, but he began to experience lung complications and an invasive fungal infection which culminated in his death at 5:52pm March 12 - 33 days after the treatment began.

The court heard how doctors initially treated the aspergillosis, an infection by common mould, but eventually recommended treating Paul's symptoms and making sure he was comfortable. "[Paul's] parents could see he was getting worse and weaker and agreed they did not want escalation of his treatment," Dr Quen Mok, an expert in paediatric care, wrote in her report.

Concluding, Assistant Coroner Sarah Bourke said there were "known number of complications of CAR T-cell therapy" but Paul had already exhausted conventional treatments. "I'm satisfied Paul's death was the result of a known complication of his treatment," Ms Bourke said. "It's appropriate for me to conclude his death was an accident."

Choking on her words, she continued: "Paul underwent treatment intentionally but sadly died as a consequence of the treatment. It's also clear without the treatment Paul would have died of leukaemia in any event.

"It's incredibly difficult for parents and families in these situations when you have young people full of life devastated by leukaemia. And certainly these trials are incredibly important so that other families will be spared the devastation the loss of a child brings."

Throughout the hearing Paul's family made it clear both him and his loved ones were grateful for the opportunity to participate in the trial and had no issues with GOSH. "They do a really great job. We trust in this treatment and hope a lot of other children can get this treatment in the future," they added.

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