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Family Judge Sanctions Experimental Treatment of Little Girl with Leukaemia

Adult patients often have to make agonising choices as to whether or not to undergo intrusive and painful medical treatment that may or may not save their lives. Where the patient is a child, however, the burden of having to make such life and death decisions sometimes falls on family judges.

The case concerned a girl who was diagnosed with leukaemia when she was six. She had spent the years since undergoing a wide range of treatments, none of which stopped the progress of the disease. Her desperate parents had at one point taken her abroad in the forlorn hope of finding a natural or homeopathic cure.

As a last resort, the NHS trust that bore responsibility for her care suggested that she take part in a trial of an experimental treatment called CAR T-cell therapy. Only two other children had to date received the therapy, which was both long and painful, involving serious potential side effects and a hospital stay of about five months. The chance of it succeeding was said to be about 10-20 per cent but, without it, doctors estimated that she would have only a very few months to live.

The girl’s parents, who had been placed under immense pressure by her illness, had separated. The mother supported the trust’s proposal, but the father staunchly opposed it. Having carried out his own research, on the internet and elsewhere, he felt that alternative remedies, with few side effects, should be tried.

Ruling on the matter, a judge noted that the father clearly loved the girl very much and that his feelings of despair and hopelessness were hardly imaginable. On the evidence, however, she found that he was clinging on to an unrealistic hope of a natural cure. She was therefore faced with a stark choice between an experimental treatment that gave the girl a slim chance of a cure, or no treatment and certain death.

Granting the trust permission to perform the experimental treatment, the judge found that its benefits outweighed the risks. It represented the only opportunity for the girl to obtain a cure and live the life she longed for. A smiley, positive, thoughtful and remarkably brave child, she clearly wanted to live and it was in her best interests to undergo the treatment. Wishing the girl and her family the very best, the judge noted that no one involved in the case could fail to be moved by their struggle.

23 September 2021
Last Updated
15 November 2021