Why has the case of British 11-month-old baby Charlie Gard struck an international nerve? At its core, this controversy is about state infringement on parental rights. The question is, whose child is Charlie: his parents’ or the state’s? Why is the hospital holding him hostage and by what authority can it override his parents’ wish to pursue therapy that could help Charlie?
President Trump, Pope Francis, 40 European parliament members, members of Congress, Terri Schiavo’s brother Bobby Schindler, and even Cher have weighed in, all agreeing the hospital should release Charlie to his parents.
According to Justice Francis in a new court hearing that took place on July 10, Charlie’s parents have until 2 p.m. on July 12 to provide “drastically new evidence” about the experimental therapy including “when it was published” and “when it became available to them.” He said, “You are going to have to persuade me that something new or dramatic has changed.” The heavy hand of the state is even asking for Charlie’s head circumference measurement to prove that Charlie’s head has grown.
The London-based Great Osmond Street Hospital (GOSH) claims his body has grown but not his head, while his parents countered that his head has increased by 2 cm this week and that the hospital is “fudging it.” How has it come to this? Why should his fate be decided upon by the state and its arbitrary measures that can’t actually determine how Charlie would do with therapy?
What’s Happening in Charlie’s Case Right Now
A new hearing has been set for July 13. Last Friday, the hospital had applied for a new hearing after receiving a letter from seven international experts asking that it reconsider Charlie’s fate. One U.S. doctor thinks a conservative estimate for the success of the experimental therapy working for Charlie is 10 percent. Charlie’s mother, Connie Yates, pleaded with the judge, “Ten percent. You would if it was your son, wouldn’t you?”
Researchers at the Vatican’s children’s hospital’s neuroscience department said tests in mice and patients with a similar genetic condition had shown “dramatic clinical improvements.” The hospital where Charlie is located claimed during Monday’s hearing that the evidence is not new. Chris Gard and Connie Yates also delivered a petition with more than 350,000 signatures to the hospital asking that they release him.
How did this case get here? On June 8, the U.K. Supreme Court gave permission to the hospital to turn off Charlie’s ventilator, as Justice Francis ruled he should “die with dignity,” a phrase borrowed from the pro-euthanasia movement. Charlie’s parents appealed to the European Court of Human Rights (EHCR). On June 27, the EHCR rejected the parents’ appeal, allowing the hospital to pull Charlie’s life support at any point, a controversial decision that launched Charlie onto the world stage.
Since then, prominent figures from across the political and religious spectrum have voiced support for Charlie. Pope Francis said he is praying for the parents “in the hope that their desire to accompany and care for their own child until the end will be respected.” He has opened up the Vatican hospital to Charlie and wants to give him a Vatican passport to supersede the court rulings.
President Trump said he would be “delighted” to help Charlie and met with British Prime Minister Theresa May at the G20 Summit in Germany on July 7. Further, U.S. Reps. Brad Wenstrup (R-OH) and Trent Franks (R-AZ) announced last Friday that they plan to introduce special legislation to make Charlie Gard a lawful permanent resident of the United States in order to expedite Charlie’s chance to receive treatment here.
It’s Best for Charlie If He Not Get Medical Care?
Make no mistake, Charlie has a serious condition. He was born on August 4, 2016 with a rare and debilitating genetic condition with an RRM2B mutation of Mitochondrial DNA Depletion Syndrome (MDDS). There are only 16 reported cases worldwide. His condition saps the vital organs of energy and causes progressive muscle weakness and brain damage. Charlie cannot breathe without the assistance of a ventilator.
In the court’s former decision, Justice Francis had said that it is in Charlie’s “best interests” that ventilation be turned off and that he receive palliative care only. Francis also said it’s not in Charlie’s best interest to undergo the therapy and that “although the parents have parental responsibility, overriding control is vested in the court exercising its independent and objective judgment in the child’s best interests.”
Francis admitted that generally “there is a strong presumption in favour of a course of action which will prolong life, but that presumption is not irrebuttable.” The judge defined “best interests” as “medical, emotional, and all other welfare issues.” In Charlie’s case, the judge did not rule with the presumption of prolonging his life.
The court’s press release stated “that Charlie would suffer significant harm if his present suffering was prolonged without any realistic prospect of improvement, and the experimental therapy would be of no effective benefit.”
But There’s Still Hope For Charlie
Charlie’s parents disagree with the court’s analysis and so do at least two international hospitals and five doctors, including two in the United Kingdom, who believe Charlie could benefit from the therapy. While it would not reverse any brain damage that has already occurred, the therapy could help to manage Charlie’s symptoms and increase his life expectancy.
What gives them hope is that 18 people have been treated with nucleoside bypass therapy for a less severe form of MDDS (TK2). One patient treated with this therapy is another U.K. boy by the name of Maxwell Smith, who was diagnosed at nine months with TK2-related MDDS and is still alive at five and a half years old as a result of this therapy.
Doctors of another boy, Arturito Estopiñan, told his parents there was no treatment and that he would die soon. Arturito is still alive today at six years old as a result of this therapy. Arturito’s parents said their son “would surely be dead by now” if he was not granted access to this therapy. Connie said, “There’s 18 children currently on this medication, they’re all getting stronger, they’re all getting better. It’s a miracle what happens.”
The therapy for Charlie would be a simple oral medication. A 2014 study of the oral medication for the TK2 therapy found that it had no adverse side-effects, that it delayed disease onset, prevented neuromuscular manifestations, and prolonged the lifespan of TK2-deficient mice.
Charlie’s form of MDDS is more severe and rare (RRM2B), affecting both his brain and muscles. While the therapy has not been tried on a person with a condition as severe as Charlie’s, given the success of treatment for other patients with various forms of MDDS as well as positive effects in lab tests and similar animal models, why should Charlie be deprived of the chance that it could also work for him as well?
Even the hospital admitted there is a “very small theoretical chance” that the therapy would work and that “this treatment could theoretically be given here,” but refuse to give it, claiming without evidence that Charlie is suffering and citing “the extent of his neurological damage.”
People Across the World Are Pulling for Little Charlie
Charlie’s mother, who spends countless hours with her son, stated time and time again, “I don’t think he is suffering or I wouldn’t be here… I don’t think his brain function is as bad as what everyone else is saying.” She reiterated on Friday that he is not in pain or suffering: “We are completely devoted to him and he’s not in pain and suffering, and I promise everyone I would not sit there and watch my son in pain and suffering, I couldn’t do it.”
New York Presbyterian Hospital and Columbia University Irving Medical Center agreed to admit and evaluate Charlie “provided that arrangements are made to safely transfer him to our facility, legal hurdles are cleared, and we receive emergency approval from the FDA for an experimental treatment as appropriate….alternatively, if approved by the FDA, we will arrange shipment of the experimental drug to Great Ormond Street Hospital and advise their medical staff on administering it if they are willing to do so.”
The doctors who want to help Charlie believe that three months of therapy at Columbia University would determine whether Charlie is responding positively to the therapy.
The U.S. doctor looking at Charlie’s documents said, “I can understand the opinions that he is so severely affected by encelopathy that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy. It is unlikely.”
However, the doctor also said that if Charlie were in the United States he would treat him if the parents desired and could pay for it. Charlie’s parents are willing to try for that 10 percent chance that the therapy will help him and as his guardians looking out for his best interest, their parental rights must not be revoked.
Charlie’s dad said at one point, “If there is no improvement we will let him go…We just want to give him a chance.” On Monday, Charlie’s dad reiterated, “If we won the court case and we got to America, and then within the first week of treatment he started suffering and he was in pain, we would let him go. This isn’t about us. This is about Charlie and giving him the chance he needs.”
Parents Should Have the Final Say
Patients, or parents in the case of a young child like Charlie, have a right to either refuse or accept treatment that is considered extraordinary. Given the slight chance of success in Charlie’s case, his parents would have been well within their rights, and even morally speaking, to refuse a new therapy and opt for palliative care instead.
Charlie’s parents have exercised their right to decide and have chosen the morally permissible option of a therapy that most would consider extraordinary means with a small chance of benefit. The hospital and the state must respect the decision of Connie and Chris on behalf of their son and that they have Charlie’s best interests in mind.
The therapy that has an estimated 10 percent chance of success may not help Charlie at all or it may help Charlie live one day, one year, or ten years longer. We do not know because it hasn’t been tried. The ultimate question in Charlie’s case is: who should decide what’s in his best interest? The answer: His parents. Not the courts. Not the hospital. Not the government.
All that Charlie’s parents are asking for is the right to decide what’s best for their own child, given the option for this experimental therapy and the second opinions of other doctors. Since Charlie’s guardians are his parents, not the state, his parents should be free to move him to another hospital that is willing to try a therapy that could save his life.
The fact that the court is open to reconsidering Charlie’s case is encouraging, but what if this hearing results in another decision to turn Charlie’s ventilator off against his parents’ will? Who gave the hospital and courts authority over Charlie’s life and death in the first place?
As the U.S. Congressmen said in a statement, “Should this little boy to be ordered to die — because a third party, overriding the wishes of his parents, believes it can conclusively determine that immediate death is what is best for him?”
This Isn’t About Money, It’s About Love
Charlie’s parents are not asking the hospital to spend any more money on Charlie. In fact, they have independently set up a GoFundMe campaign where they have already raised the equivalent of more than $1.7 million in private funds from more than 80,000 supporters around the world to pay for the trip and therapy, without any cost to the British health-care system. A U.S. hospital has even offered to give Charlie free treatment if he is able to travel to the United States.
Let’s hope that the courts will not dig in their heels again, over and above the will of Charlie’s parents, who are just seeking to give Charlie another chance at life though experimental therapy. If the hospital continues to deny Charlie the oral medication that could save him, it must release Charlie back to his parents. The government should not decide if he lives or dies, and the hospital should have absolutely no say in whether his parents can transfer his care elsewhere.
Parents have a right to make medical decisions on behalf of their children so long as they have the best interests of their children in mind, as do Charlie’s parents. It is nothing short of a tragedy to witness Charlie’s parents stripped of their basic rights to seek medical therapy for their sick child, just because a British judge and hospital think they know better. The world is watching and waiting for the United Kingdom to do the right thing, defer to his parents’ wishes, and either give Charlie the therapy that could save his life or release him so that he could be transferred to one of the hospitals that is already willing to offer it. In the words of Charlie’s parents, “If he’s still fighting, we’re still fighting.”