Eight-month-old Indi Gregory died on Monday in Queen's Medical Centre in Nottingham, in the UK, after battling mitochondrial disease. She had been the centre of a series of legal battles between the hospital and her parents. A judge ruled in favour of the doctors. Her life support was withdrawn and she died soon afterwards. In this article, the director of the Anscombe Bioethics Centre, David Albert Jones, commented on the controversial case shortly before Indi passed away.

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The case of Indi Gregory is depressingly familiar. We have seen it too many times before.

A severely-ill child is being treated in an National Health Service [NHS] hospital in England with a condition that involves brain damage. The doctors have reached a point when they think that the child’s situation cannot be improved. Life could be extended, perhaps by weeks or even months, but death is inevitable and in the meantime, they believe that the treatment is futile and is imposing a burden.

The doctors wish to withdraw what they consider to be “invasive” treatment, including ventilation, while maintaining pain relief. It is not clear from what is currently in the public domain whether the less-invasive care plan would involve provision of food and fluids.

Indi’s parents, Dean and Claire, still hope against hope for future improvement. They also believe that, in the meantime, Indi has meaningful interactions with them and is soothed by her hair being stroked by them and that these positive experiences outweigh the occasions of discomfort that Indi may experience when the doctors or nurses need to intervene. They want all life-sustaining treatment to be given.

The NHS Trust took the case to court to allow withdrawal of life-sustaining treatment. In this legal battle the resources of NHS Trusts are vastly greater than those of the parents (in 2021, Nottingham University Hospitals NHS Trust had an annual budget of £1.3 billion (US$1.6 billion), the parents are reliant on legal aid). The parents are faced with a process that is unfamiliar and where it is difficult to get access to medical information about their child.

In court the child is represented, not by the parents, but by a guardian. In principle, the guardian could take the same view as the parents but in this case, as in most such cases, the guardian emphasised the burdens of treatment rather than the benefits of life and viewed Indi’s quality-of-life very negatively. The judge, again as in most such cases, sided with the doctors and with the guardian and declared that it would be in Indi’s best interest for “invasive” life-sustaining treatment to be withdrawn.

As Indi would not be able to receive the treatment that the parents thought in her best interests if she stayed in England, the parents asked permission to have Indi transferred to the Bambino Gesu Paediatric Hospital in Rome, which was prepared to accept her. Indi was also granted Italian citizenship.

Transfer for healthcare abroad is difficult in practical terms and financially and it carries risks for a child, but it is sometimes done with the agreement of a hospital. In disputed cases however, the Trust almost always opposes transfer of care. In this case the Trust objected, the case returned to court, and the court refused permission for her to leave.

In response the Italian Consul, acting as Indi’s guardian, made the application under the 1996 Hague Convention on parental responsibility and the protection of children. In a final cruel twist however, the court ruled on 10 November that not only could Indi not travel to Italy but that life-sustaining treatment must be withdrawn and the final withdrawal of treatment and end-of-life care could not occur at the family home.

Extubation occurred in a hospice on Sunday, 12 November.