The highly emotive Charlie Gard case, in which parents became locked into a bitter dispute with medical professionals about the treatment of their son, has once again entered the headlines.
Charlie Gard suffered from mitochondrial DNA depletion syndrome and died in 2017, shortly before his first birthday, after life support was withdrawn.
Great Ormond Street Hospital determined that maintaining Gard’s life support was futile as it would only prolong his suffering, and there was no prospect of effective treatment. When Gard’s parents opposed this and wanted to seek experimental treatment abroad, the hospital asked the High Court to overrule the parents, which it did.
The ruling was made in spite of an offer by an American hospital to treat Gard and a fundraising effort worth £1.3 million to pay for the costs. The case attracted the attention of President Donald Trump and the late Pope Francis, who both supported the efforts of the parents.
Last month the Supreme Court ruled that medical professionals involved in such cases can no longer expect anonymity as a matter of course. In the Gard case, the clinicians involved were given anonymity for “unlimited duration”.
Now Gard’s mother, Connie Yates, is challenging that anonymity and the injunctions which effectively prevent her from telling the full story.
Lawyers representing Yates have asked both the hospital and the Supreme Court to overturn the injunctions, calling them “disproportionate”.
Yates said, “To have these restrictions lifted would feel like I was being given my voice back. It is difficult to put into words what it is like as a parent, in a highly tragic and vulnerable position, to be silenced and threatened with being criminalised if you speak about the people condemning your child to die.“I have lived with this injustice for eight years. No parent should have to go through that."
Yates questioned whether the clinicians in her son’s case would have made the same decisions if they had been subject to proper scrutiny.
“I would never condone any abuse of clinicians, I didn’t at the time and I do not now," she continued.“This isn’t about targeting clinicians. It is about accountability in the NHS, transparency, honesty, open justice and the freedom of parents to leave no stone unturned in trying to help their children.”
Her case is being supported by the Christian Legal Centre.
