Connie Yates and Chris Gard have decided to end their five-month legal battle to take their son Charlie Gard to the United States for treatment. The baby suffers from a mitochondrial condition and on June 30 British officials ordered Charlie’s life support turned off. The child remained on life support as offers of help poured in from, among many others, Pope Francis and U.S. President Donald Trump.
A judge told Connie Yates and Chris Gard that “no parent could have done more for their child,” but that is not quite right. The parents sought to do everything they could to save Charlie, but the British government monopoly health system prevented them from doing so.
The parents blamed “a whole lot of wasted time” for the deterioration of Charlie’s muscles revealed in a recent MRI scan. As they told reporters, “Had Charlie been given the treatment sooner he would have had the potential to be a normal, healthy little boy” adding, “Our poor boy has been left to just lie in hospital for months without any treatment whilst lengthy court battles have been fought.” Their son Charlie, “has been left with his illness to deteriorate, sadly, to the point of no return.”
Charlie Gard was born a healthy baby on August 4, 2016, but at eight months diagnosed with mitochondrial DNA depletion syndrome, which causes progressive muscle weakness and brain damage. Charlie began to lose weight but in January 2017 Connie Yates found an American doctor willing to offer the trial therapy known as nucleoside.
Connie succeeded in raising enough money to cover Charlie’s travel to America by air ambulance and the cost of the experimental treatment. But then the British legal system handed Charlie a setback.
On April 3, 2017, a High Court judge questioned whether Connie and Chris should be allowed to take Charlie to America for treatment, and whether doctors at the Great Ormond Street Hospital should turn off the baby’s life-support system. On April 11, the court ruled that the doctors were in fact permitted to do so.
The decision devastated parents Connie and Chris, both in their thirties. In late April, more than 110,000 people signed a petition calling on Prime Minister Theresa May to release Charlie for travel to the United States. Charlie remained in hospital and on May 25, three Court of Appeal judges ruled that doctors should end the child’s life-support treatment.
On June 8, three judges of the Supreme Court rejected the parents’ appeal but told doctors to keep Charlie on life support for another day so the European Court of Human Rights in Strasbourg, France, could consider the child’s case. On June 13, the ECHR ruled that Charlie should be kept on life support until Monday June 19.
On June 27, the European court rejected the parents’ plea to intervene in the case of Charlie Gard.
As the ECHR statement put it, “the decision is final.”
Charlie would be “allowed to die,” and the parents were told that this was in his best interest. Great Ormond Street Hospital bosses said they would be in no rush to change Charlie’s care and would engage in careful planning and discussion about the child’s fate.
As of this writing Charlie remains on life support. Connie and Chris will “let our son go and be with the angels,” but his story is far from over. Indeed, it brims with lessons for all but the willfully blind.
As the ordeal of Connie and Chris confirms, parents care more for their child than politicians, judges, courts, and hospital bosses. In tragic cases like Charlie’s, the parents need to believe they have exhausted all possibilities to save their child. Despite somber proclamations by British judges, Connie and Chris were not allowed to do so.
Connie and Chris have been battling a government monopoly, and in this system patients get only the care the government wants to give them. The British health service didn’t want to give Charlie the experimental treatment available in America. More important, the system also blocked Connie and Chris from taking Charlie to America, even at their own expense. He languished in hospital until, as the parents said, “the point of no return.”
As Charlie’s case confirms, government monopoly health care can involve a surrender of freedom of movement, the freedom to travel abroad. Once freedom of any kind is lost, it is hard to get it back. So best not to lose it in the first place.
Those working on health reform in the USA can learn a lot from the ordeal of Connie Yates and Chris Gard. The brave parents fought the good fight, but the government prevented them from doing their utmost for their beloved child. That’s the injustice inherent in the kind of government monopoly system Hillary Clinton and Bernie Sanders want.
Adoption of that kind of system in America could be a point of no return for the people’s freedom of choice in health care. In cases of infants with rare conditions, it could be a matter of life and death. That is the enduring lesson of Charlie Gard, born on August 4, 2016.