Charlie Gard judges were wrong to deny parents the hope of saving their remarkable boy
Even untried treatment in the United States would have been better than doing nothing, says Alban Maginness
The death of Baby Charlie Gard last Friday, though not unexpected, was still a profoundly sad event. When you look at the beautiful photographs of Charlie, you can understand the deep love that his father, Chris Gard, and his mother, Connie Yates, had for their precious baby.
As a parent, you can understand the dreadful torment that those parents went through, watching their baby suffer, with the knowledge that he would, in all probability die, and die quickly.
One can only admire their sheer guts and determination in taking on the medical and legal establishment in London.
Their relentless campaign to have their child receive alternative, but experimental, treatment in the United States of America is a testament to the strength of parental love. Neither the courts nor the hospital come out of this with great credit.
Baby Charlie was born on August 4 last year and, for the first three months, his parents did not suspect anything was wrong, until they realised he was not putting on weight.
On October 11, he was brought to Great Ormond Street Hospital and hooked up to a mechanical ventilator because he had breathing problems. There, he was diagnosed as having mitochondrial DNA depletion syndrome (MDDS).
Later, he began having persistent seizures as his brain function deteriorated. He had become deaf and had no ability to breathe, or move his eyes on his own. Without doubt, the baby was dangerously ill, and without extraordinary treatment he was bound to die of MDDS.
In fairness to Great Ormond Street Hospital, his medical team in January decided to attempt an experimental therapy, but before that could happen, Baby Charlie had further severe seizures and, at that point, the doctors withdrew their support for the new treatment. They felt it would not be in his best interests and, at that point, started to discuss with Chris and Connie about withdrawing life support and providing palliative care.
Failing to reach agreement with Charlie's parents, the hospital went to the courts to apply for the life support to be withdrawn, but this was resisted by Chris and Connie because they wanted to take him to America for other experimental treatment.
Thus ensued the extended court battle that has dominated our news over the past five months.
All of the court rulings went against the parents and, eventually, on July 24, they withdrew their challenge to the withdrawal of mechanical ventilation.
They did so because the American doctor who had suggested alternative experimental therapy was no longer willing to offer that therapy as, at that point in time, he could see no chance of it working due to irreversible damage already caused by Charlie's MDDS.
If he had been allowed to intervene earlier, maybe he would have had a proper opportunity to apply the experimental treatment with real effect.
An attempt to permit Charlie to die at home was rejected by the court. It ruled that the baby would be moved to a hospice, with mechanical ventilation withdrawn soon thereafter.
But a very serious question arises as to whether the courts were right to consistently support the hospital and to reject the parents' request to bring the baby to the US for experimental treatment.
Deciding to accept or reject life-supporting care is undeniably an extremely difficult medical/legal decision. However, in the circumstances, it would appear that the courts regarded the professional opinion of the hospital as having much more weight than the simple, but loving, desire of the baby's parents to exhaust a further treatment opportunity, which they could well afford due to the immense generosity of the public.
While the courts would contend that they were simply adhering to previous medical/legal decisions, the Gard case does differ insofar as they were taking Charlie off life support and declaring that the professional medical views took precedence over Charlie's life, even if the parents could find alternative treatment, albeit experimental.
Is this legal reasoning really in the best interests of the child? Surely, if there was a chance of preserving the child's life, shouldn't that option have been preferred? If the child were to die, despite undergoing experimental treatment, what would have been lost by taking that chance? At least a reasonable effort in saving the child's life would have been attempted.
The courage and commitment of Charlie's parents is a great model to all parents and to society as a whole in respect of the value of human life.
In other circumstances, he might have been regarded as expendable, given his serious disabilities, but his parents were prepared to support him not despite his disabilities, but because of his disabilities.
That is surely an extraordinary example and a defining principle to follow.