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The Case of Charlie Gard, and Why We Must Always Err on the Side of Compassion

Danielle Dent-Breen's picture
Charlie Gard Compassion

Charlie Gard, an 11-month old infant, has captured the attention of the world. He was born with an extremely rare degenerative genetic disease, and is currently unable to see, breathe, or move on his own. Doctors at Great Ormond Street Hospital—arguably one of the best pediatric centers in the world—have treated Charlie since his diagnosis with Mitochondrial DNA Depletion Syndrome when he was just one month old. But now, his doctors say that his disease has progressed to the point that there is no hope for future survival with any quality of life. The medical team brought in doctors from Barcelona, Spain, who came to the same conclusion.

However, Charlie’s parents, Chris Gard and Constance Yates, disagree with the doctor’s assessment. In December, desperate to help their child, they found a pediatric neurologist and hospital in the United States who were willing to allow Charlie to undergo an experimental treatment, called nucleoside bypass therapy, which they believe could slow the progression of the disease. His parents created a GoFundMe page to raise the money needed for transportation and medical costs, and as of this writing, have raised £1,322,320 ($1,715,000) for his care. All appeared to be going as planned, until the court denied Charlie’s parents the right to remove him from the hospital and transport him to the U.S. for care.


The timeline.

In April, doctors petitioned the courts to gain permission to remove Charlie’s life support and allow him to die against his parents’ wishes. The courts granted this permission, sparking international outrage. On Thursday, June 29, Charlie’s parents lost the legal battle when the European Court of Human Rights upheld the decision of the UK courts and ruled that his life support could be switched off. The hospital originally planned to remove life support on June 30, but then agreed to delay that action for an unspecified time.

In the wake of the international court’s decision, Charlie’s story has received mass media attention, and leaders from around the world have offered treatment and support. His story has been taken up even by Pope Francis and U.S. President Donald Trump.

The Pope further issued a statement in support of Charlie’s parents, saying in part, that he was following the case "with affection and sadness," adding that he was praying that Gard's parents' "wish to accompany and treat their child until the end isn’t neglected.” Pediatric Hospital Bambino Gesu, known as “the Pope’s hospital”, is situated near the Vatican’s walls, and has offered to give sanctuary to the 11-month-old boy. The president of the hospital, Mariella Enoc, issued a statement: “I have asked the health director to check with Great Ormond Street Hospital if there are sanitary conditions for an eventual transfer of Charlie to our hospital. We know that the case is desperate”.

Donald Trump, as well, appealed to British Prime Minister Theresa May, and called for Charlie to be allowed to travel to the U.S. for treatment.

Just hours after this tweet, a U.S. hospital and group of doctors offered to provide his care for free, although, due to privacy concerns, the name of the doctors and hospital were not released to the public.

Speaking to the House of Commons, Prime Minister Theresa May said on Wednesday that she understands that Charlie’s parents are in an “unimaginable situation” and trying to do what’s right for him, but that doctors are sometimes forced to make “heartbreaking decisions”. She has since doubled-down on her support for the court’s decision in favor of Great Ormond Street Hospital, and is said to be preparing for a showdown of sorts with Donald Trump at the G20 summit on Friday over Charlie's care.

What Charlie can teach us all:

The implications of Charlie Gard’s case are both intimate and far-reaching. We are forced to answer the one question, “Who knows what is truly in Charlie’s best interest?” There is no doubt that all parties involved in this heartbreaking case believe that they have Charlie’s best interests at heart, but they have vastly different ideas about what is “best”.

In the United Kingdom, the English Children Act of 1989, in part, establishes precedent here, in that it gives hospitals the right to override parental authority when it comes to making medical decisions that affect a child. For supporters of the Gard family, however, this is another example of the government treading on the rights of its citizens. The case is about the right to life, for sure, but also about freedom and individual liberty.

Nobody wants to ever be placed in the position to have to make a heartbreaking decision such as the one facing Charlie’s parents. But ultimately, these most intimate decisions should be made by the family, and the family alone. Doctors may think that they would make different choices if this were their own family, but ultimately that does not mean that the parents’ decision is not also made in Charlie’s best interest. If Charlie were my son, I would want the freedom to exhaust all available options to find treatment—to have even the tiniest glimmer of hope. Will the treatment in the U.S. save Charlie? Nobody can say for sure. But in situations like these, it is always preferable for families—not governments—to make the most difficult choices, whether it be for our children, our parents, or our spouse. As the saying goes, “Where there is life, there is hope,” and it is not up to the government to extinguish that hope prematurely.

The hospital, despite their recent court victory, should still defer to the parents. No parent should ever have to face the death of their own child. No parent should ever have to face a future without hope. And no parent should ever be told that the State knows best. Charlie Gard’s parents should be allowed to make the decisions regarding his treatment, and his end of life care. This is the only compassionate answer.

**EDIT**A previous version mistakenly stated that Friday's meeting would be the G8 summit, when in fact, it is the G20 summit, taking place in Hamburg, Germany on July 7, 2017.