Baby Charles Gard with parents Connie Yates and Chris Gard.

Baby Charles Gard with parents Connie Yates and Chris Gard.

Since last October, Charlie Gard has lived at the Great Ormond Street Hospital for Children in London, England. He was born in August 2016 with mitochondrial DNA depletion syndrome, which has no known cure. Doctors at the hospital wanted to withdraw treatment saying there was nothing they could do to save his life. His parents, Chris Gard and Connie Yates, wanted to seek treatment options elsewhere. The hospital obtained multiple court rulings preventing Charlie’s parents from moving the infant as they campaigned to keep him on life support and sought permission to travel to the United States for experimental treatment.

The case made international headlines in late June when both President Donald Trump and Pope Francis tweeted support for the parents and offered to help move the child to a jurisdiction where he could receive more thorough medical care.

Earlier this year, doctors at Great Ormond Street hospital approved an experimental treatment but withdrew its approval when Charlie’s condition worsened after a number of seizures. On Feb. 24, they sought to remove mechanical ventilation which the baby requires to breath, and Gard and Yates opposed the application. The High Court ruled in April that it was in Charlie’s best interest to have his ventilation withdrawn and provided withpalliative care. One doctor told the court, “it could be argued that Charlie would derive no benefit from continued life,” because of the pain he may feel due to the treatment.

Bioethics expert Wesley Smith wrote at National Review Online, the medical and legal establishments’ decisions regarding Charlie are “a product of utilitarian bioethics advocacy for the right to refuse wanted life-sustaining treatment — called ‘futile care’ — based on the doctor’s or a hospital bioethics committee’s values on the moral worth of the ill patient’s life and/or the high cost of care.”

The Court of Appeal upheld the lower court’s decision. The parents sought donations over the internet to help pay for travel to and treatment in the United States. The parents appealed the decision to the United Kingdom Supreme Court and European Court of Human Rights, both of which rejected their appeals.

The parents then petitioned to have Charlie taken home to die, but that, too, was rejected by the courts.

On July 7, the High Court heard the case again and sided with the parents. Justice Peter Francis said “in light of claims of new evidence relating to potential treatment,” Charlie should be allowed to live. He scheduled a new hearing for July 13 (after The Interim went to press). While the parents considered the hearing a sign of hope, Francis said it would take “dramatic” evidence for him to reverse his April decision barring Charlie from being removed from the hospital to travel abroad for care.

On July 10, Katie Gollop, the barrister for the hospital, restated its position that life support should be switched off because the child had suffered “irreversible brain damage.” Gard broke down in court, interrupting the proceedings by demanding the Gollop “start telling the truth” about his child. The judge was patient in dealing with the outburst, acknowledging the emotional nature of the case.

Even if the courts rule in the family’s favour, it is not clear if the child could travel to the United States for care. Immigration can refuse entry to travelers for health reasons, and an unnamed hospital willing to take Charlie said it was contingent upon the Food and Drug Administration expediting approval of the experimental treatment for this particular case.