Judges decides: Tafida Raqeeb can go to Italy for treatment.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Great news.

Last July I wrote about Tafida Raqeeb, a five-year-old who had a brain bleed on February 9 that left her in coma at the Royal London Hospital where the doctors claimed that she had no hope. Tafida was diagnosed with arteriovenous malformation, a rare condition which causes the blood vessels to have abnormal connections between the arteries and veins.

Doctors in Genoa, Italy stated that they had an expertise in this condition and were willing to treat Tafida. But the Royal London Hospital is refusing to let the parents take Tafida to Genoa.

Tafida's parents have won the legal battle enabling them to bring Tafida to Genoa for treatment. According to the article by Jamie Johnson in The Telegraph:

Mr Justice MacDonald, who had analysed evidence at a recent High Court trial in London, approved a move to Italy in a ruling delivered on Thursday.

Tafida's mother, Shalina Begum, was reported by The Telegraph to state:

"We have always had Tafida's best interests at heart and we have never wanted to come to court to have to argue for our rights to seek continued care in a world-class hospital willing to give her the treatment she needs," she said. 

"The entire experience of having to fight for our daughter's life over the last three months has been exhausting and traumatic for all of her family." 

She added: "It is vital for Tafida that she is removed from the Royal London Hospital and transferred to the Gaslini ... at the earliest opportunity. This is our priority for Tafida."

Similar cases in the UK did not end with the transfer but rather the death of the children involved. Hopefully this case will open the door to other families having the opportunity to receive treatment in other jurisdictions even when British medical experts consider the child to be futile.

* Tafida Raqeeb is the latest case of a UK child being denied treatment abroad. 

* British Doctors refuse Tafida Raqeeb, a chance at life.

Once Again, British Doctors Refuse a Child, Tafida Raqeeb, a Chance at Life.

By Mark Hodges (EPC Researcher)

In a culture of death, British doctors destroy chance for life.

Tafida Raqeeb

Such is the case right now for Tafida Raqeeb, who is dying in a London hospital because her doctors refuse to release her to where she could be cured.

The little five year-old has a rare and fatal blood vessel condition called “arteriovenous malformation.” Specialists in Italy have expertise in treating that very condition, but the Royal London Hospital is keeping Tafida literally imprisoned in their facility.

Sign the citizengo petition to let Tafida go and get the care that she needs. (Link).

The Giannina Gaslini Institute in Genoa has assembled a medical team for Tafida, and is in contact with her doctors in London. The Sun quotes the Institute’s Italian doctors as predicting, “There is a good chance she will emerge from the coma she is in.”

Yogi Amin, a human rights lawyer representing Tafida, assured decision-makers that:

“there is no evidence that Tafida will be harmed during transit or abroad, and her loving parents should have a legal right to elect to transfer their daughter to another hospital for private medical care.”

Still, the UK hospital refuses to even let Tafida’s parents take her for a potential healing in Italy at their own expense.

In fact, the Sun reports that the British doctors are suing to pull the plug on Tafida, saying, “It would be better for her to be left to die.”

And a totally separate lawsuit by Barts NHS Trust seeks to give hospitals the legal right to cut off all medical care if a patient in Tafida’s condition gets worse.

But Tafida’s parents, Shelina and Mohammed, have taken their fight for their daughter’s life to the High Court.

European Union law and Human Rights attorney Jason Coppel QC charged that Tafida’s “confinement is against her will.” He emphasized the key point, that “Her parents are the sole people who currently have the legal right to make decisions for her.”

Despite Tafida’s life or death condition, Justice MacDonald delayed making any decision until the Fall. He only said he will hear both the parents’ and the hospital’s sides in September.

But time is of the essence. Ron Liddle of the Sun opined, 

“I can understand doctors telling Mohammed and Shelina there is nothing more that they can do for their little girl. What is beyond belief — beyond imagination — is that they would insist on keeping the child there to die when there is genuine hope she might be cured.”

Little stated,

“I am not a medical expert, ...but I do know that if there is hope for Tafida, the longer they wait to treat her, the less likely there will be a good outcome.”

Tafida’s case is similar to the case of two-year-old Alfie Evans. Alfie had a GABA-transaminase deficiency, and his mom and dad wanted to take him to Vatican-owned Bambino Gesù hospital for experimental treatment. That facility in Rome was ready and waiting to care for Alfie.

But Liverpool’s Alder Hey hospital refused to release Alfie.

Attorney Coppel (who now represents Tafida) argued in Alfie’s last chance attempt --after his doctors had his ventilator unplugged for two days-- to get Alfie to specialists at Bambino Gesù. At the time, Alfie was breathing on his own and could have made the trip to Rome.

But the judge ruled against parental rights, and little Alfie languished three more days in Liverpool’s Alder Hey hospital until he died.

Similarly, nearly one-year-old Charlie Gard was diagnosed with Mitochondrial DNA depletion syndrome, and his mom and dad sought to get him to the United States for experimental treatment.

British doctors sued to unplug Charlie’s breathing machine so he would die, instead of releasing Charlie to his parents in the hopes that he might be helped by American specialists.

New York’s Presbyterian Hospital was ready for Charlie (as was Bambino Gesù in Rome), but British judges blocked Charlie’s parents, and he quickly died after his air was cut off.

It seemed to many that the Brits --both physicians and judges-- had stepped over the line from “doing no harm” to denying potentially beneficial treatment based on futile care theory.

Another child, eight-year-old Ashya King, was in Southampton suffering from a brain tumor. His parents were concerned about his treatment, and wanted to take him for proton therapy elsewhere.

When the hospital refused to acknowledge parental rights and release Ashya, Brett and Naghemeh King snuck their son out of the hospital --making them fugitives for the sake of their son’s life.

A European continent-wide manhunt was launched against Ashya’s parents. They were finally apprehended in Spain.

But their little Ashya was given treatment --which is what the now "criminal" parents were seeking all along.

The illegally-sought treatment cured Ashya. Today Ashya is cancer-free, with no brain damage from his now non-existent tumor.

The Sun’s Ron Little reported.

“The parents were right. The doctors were horribly wrong,” “Our medical professionals are, by and large, brilliant. But there is sometimes a grotesque arrogance and pigheadedness about them.”

The Anglican church also hasn’t helped. Bishop John Sherrington of Westminster said he would pray for Tafida, but he offered no support for Tafida’s life or for her parents’ heartbreaking plight.

Sherrington even equated the hospital’s lawsuit for Tafida’s death with her parents’ fight for her life. “I hope that all due weight will be given to the wishes of her parents, while also respecting the clinical judgment of the doctors caring for her,” he hopelessly and irreconcilably stated. “Those of us not in possession of all the relevant information might best be reserved in our judgment.”

In Italy, life-support is not withdrawn from children unless they are declared “brain-dead.” Tafida is not “brain-dead,” and may be able to make it --as long as doctors do not unplug her ventilator-- until her preliminary hearing in September.

Tafida Raqeeb is the latest case of a UK child being denied treatment abroad.

By Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Tafida Raqeeb has been diagnosed with arteriovenous malformation, a rare condition which causes the blood vessels to have abnormal connections between the arteries and veins.

Tafida Raqeeb

Tafida had a brain bleed on February 9 that has left her in coma in the Royal London Hospital where the doctors claim that there is no hope.

Doctors in Genoa, Italy state that they have an expertise in this condition, they are willing to treat Tafida, and “they suggest there is a good chance she will emerge from the coma she is in,” according to Ron Liddle of The Sun (a UK newspaper). But the Royal London Hospital is refusing to let the parents take Tafida to Genoa.

“The view of the doctors there is that they can do nothing more for her and that it would be better for her to be ­left to die,” Liddle writes.

Sign the citizengo petition to let Tafida go and get the care that she needs. (Link).

Some people have compared this case to Charlie Gard whose parents founght unsuccessfully to move him to an American hospital for experimental treatment.

Liddle argues that the decision by the Royal London Hospital is grotesque, arrogant and pig-headed. He states:

I can understand doctors telling Mohammed and Shelina [the parents] there is nothing more that they can do for their little girl. What is beyond belief — beyond ­imagination — is that they would insist on keeping the child there to die when there is genuine hope she might be cured.

It is all terribly similar to the case of Ashya King, an eight-year-old lad who had a brain tumour and was being treated at a hospital in Southampton.

The treatment he was receiving, his parents feared, threatened to cause grave brain damage and they instead wanted him to be treated via proton therapy in Prague.

The hospital said: “No, he stays here.” And so the parents, Brett and Naghemeh King, were forced to abduct the lad, sparking a Europe-wide manhunt. They were arrested in Spain . . . where Ashya also received treatment.

Five years later, he is cured. Free from cancer. No brain damage. The parents were right. The doctors were horribly wrong. Our medical professionals are, by and large, brilliant. But there is sometimes a grotesque arrogance and pigheadedness about them.

I am not a medical expert, but I do know that if there is hope for Tafida, that the longer they wait to treat her, the less likely there will be a good outcome.

Sign the citizengo petition to let Tafida go and get the care that she needs. (Link).

The Anonymous Three: Child euthanasia in Belgium and Elsewhere.

This article was published by the disability rights group Not Dead Yet on September 19, 2018

By Lisa Blumberg

The Belgium Federal Commission on the Control and Evaluation of Euthanasia in its most recent report of Belgium euthanasia statistics stated that between January 1, 2016 and December 31, 2017, three children died by lethal injection under the country’s euthanasia law. They was a nine year old with a brain tumor, an eleven year old with cystic fibrosis and a seventeen year old (probably a boy) with Duchenne muscular dystrophy. (1) 

We know nothing else about these persons. We don’t even know whether each of them had involved parents or if one or more had guardians. In both life and untimely death, they are reduced to age and general diagnosis. As individuals, they are given no backstory. They are profoundly anonymous.

It calls to mind that in 1980s America, infants who were denied basic medical care and nourishment due to disability were called “Baby Does”. (2)

Belgium’s euthanasia law, as amended in 2014, allows children of any age to opt for a lethal injection provided certain criteria are met. A doctor must state that the child is “in a hopeless medical situation of constant and unbearable suffering that cannot be eased and which will cause death in the short term.” Another doctor who is a psychiatrist must opine that the child understands what euthanasia is and is not “influenced by a third party”. Parental consent must be obtained.

These rules have been characterized as very strict (3) but they implicitly allow the two doctors and the parents to drive the process. A child can be killed if his doctor judges that he is embroiled in hopeless suffering and will die soon, the parents agree that the child would now be better off dead, and the child buys into this enough that the second doctor – who knows the judgment of the first doctor – can attest the child is acting of his own free will. (I call this the domino theory). Did something like this happen to any of the anonymous three? We just don’t know.

All the criteria are subjective. For example, what is the dividing line between a child being influenced in her decision and not being influenced? The Conversation Project in the U.S. suggests that one way to elicit a “seriously ill” child’s views on end-of-life care is to discuss heaven. (4) Will bringing up heaven when speaking about options influence a nine year old who may view heaven as Disneyworld? Might an eleven year old be influenced if she reads an article about how much it costs to treat kids like her? Would knowing that your parents would consent to euthanasia if you wanted it influence a seventeen year old? It is enough to make a psychiatrist’s head spin. What underlines a finding of constant suffering? Would a doctor ever equate the disability associated with a condition with suffering? Would suffering associated with a lack of pain management or with treatment delivered in a needlessly invasive way ever be erroneously attributed to the child’s condition rather than to a deficiency in medical practice? Until quite recently, babies were operated on without anesthesia in the United States.

Luc Proot, a member of the Belgian Commission, said in regard to each of the anonymous three, “I saw mental and physical suffering so overwhelming that I thought we did a good thing.” (5)

Some things are strange about this statement. It suggests that Proot met each of the kids. Instead, as part of his official role, he read the case file on each child after they died – case files written by the doctors involved in the euthanasias and whose identities like the identities of the children were withheld. (6)

Proot said “we did a good thing.” This seems like an acknowledgment that the children, rather than being beneficiaries of children’s rights and in charge of their destinies, were acted upon.

Lastly, there is no mention of the kids being close to death.

In Belgium, euthanasia is available to a wide swath of the adult population. To be sure, those with terminal illness can request the needle but so can people with two or more incurable conditions, neither of which is life threatening, as well as people with dementia or psychiatric disorders. In 2017 there were 375 cases of reported euthanasia of people whose deaths were not expected in the near future or 16.2% of all cases of reported euthanasia. (7)

With children though, euthanasia is supposed to be restricted to cases where death is near. There is no way to speculate on how far along the 9-year-old’s brain tumor was but there is a good chance that the 11-year-old and 17-year-old were not inevitably dying. Today, cystic fibrosis and Duchenne muscular dystrophy are chronic, disabling diseases but with proper medical management, they don’t tend to be fatal in childhood. The median life expectancy of a child born in the United States with cystic fibrosis is now 43 years and that doesn’t factor in the scientific advances that are likely to occur. (8) Guys with Duchenne often live through their 30s and sometimes into their 40s and 50s. (9) To put this into context, the average life expectancy for men and women in the United States in 1917 was 48 and 54 years respectively and this was before the great influenza epidemic where average life expectancy really plummeted. (10)

Were their special circumstances leading the doctors of the eleven-year-old and the seventeen-year-old to conclude they were both close to death? We just don’t know. Had the children had access to reasonable and empathetic care for their condition? We just don’t know. Were these instances where the doctors conflated ongoing disability with a terminal state? We just don’t know.

Parents usually want the best for their offspring but it is naïve to assume that the need for parental consent is a foolproof safeguard. Doctors are authority figures. They steer parents just as parents steer their children. When Stephen Drake was born, the doctor who injured him through improper use of forceps told his parents that the odds were 100 to 1 against him living through the night, and the odds were a million to one against him not being a “vegetable” if he did survive. Stephen has written, “The odds the doctor cited for my survival and recovery were almost certainly made up on the spot and were aimed at getting my parents to ‘accept’ my death as a good, if not clearly inevitable, thing”. (11) Fortunately for us all, his parents rejected the suggestion but there may well have been other cases where this doctor succeeded in using a speculative prognosis to convince the parents to “let nature take its course.”

In the 1980’s, the groups who opposed any legal protections for disabled infants in hospitals -mainly medical groups – argued that parental autonomy was paramount. Nevertheless, one pediatrician told me that as long as she evidenced enough concern for child and family, she could generally get parents to agree to almost anything. She felt that parental autonomy was quite often a sham.

Of course, there have been cases like the Charlie Gard case in Britain where parents have indeed wanted life sustaining care for their child and have been opposed by doctors and hospitals.

Why was parental or guardian consent given for the euthanasia of the anonymous three? We just don’t know.

In the last analysis, all that can be said about the fate of the anonymous three is what Charles Lane said in his opinion piece in the Washington Post, “the Belgian public’s support for euthanasia remains undiminished. The precedent for euthanizing children has been established, and more will almost certainly receive lethal injections this year, next year and the year after that.”(12)

As for the Baby Doe controversy, it was never resolved, just submerged. Food, water and antibiotics in hospitals have been redefined as life support and extraordinary care, depending on the circumstances.

As a young professional woman in the 1980s, I had the wind knocked out of me when I learned there was no social consensus about the right of people with disabilities to survive early childhood. I would like to say to the young people with disabilities of today, there is a resistance. Older people with disabilities are working hard to make you safe in medical settings. We will be passing the torch to you.

FOOTNOTES

1. http://alexschadenberg.blogspot.com/2018/08/euthanasia-in-belgium-social-experiment.html?utm_source=Euthanasia+Prevention+Coalition+Contacts&utm_campaign=bc1ff5964a-EMAIL_CAMPAIGN_2018_08_31_02_01_COPY_03&utm_medium=email&utm_term=0_105a5cdd2d-bc1ff5964a-198574557
2. https://www.washingtonpost.com/opinions/children-are-being-euthanized-in-belgium/2018/08/06/9473bac2-9988-11e8-b60b-1c897f17e185_story.html?utm_term=.0310c1b7da8d
3. http://www.raggededgemagazine.com/0700/0700ft1.html
4. https://www.cbsnews.com/news/child-dies-by-euthanasia-in-belgium-where-assistance-in-dying-is-legal/
5. https://theconversationproject.org/wp-content/uploads/2017/02/ConversationProject-StarterKit-Pediatric-English.pdf
6. https://www.washingtonpost.com/opinions/children-are-being-euthanized-in-belgium/2018/08/06/9473bac2-9988-11e8-b60b-1c897f17e185_story.html?utm_term=.0310c1b7da8d
7. Ibid.
8. http://alexschadenberg.blogspot.com/2018/08/euthanasia-in-belgium-social-experiment.html?utm_source=Euthanasia+Prevention+Coalition+Contacts&utm_campaign=bc1ff5964a-EMAIL_CAMPAIGN_2018_08_31_02_01_COPY_03&utm_medium=email&utm_term=0_105a5cdd2d-bc1ff5964a-198574557
9. https://www.cff.org/CF-Community-Blog/Posts/2017/Survival-Trending-Upward-but-What-Does-This-Really-Mean/
10. https://www.mda.org/disease/duchenne-muscular-dystrophyhttps://www.google.com/search?ei=aH2aW-S0Os-izwKWjrrYBw&q=life+expectancy+1918&oq=life+expectancy+1918&gs_l=psy-ab.3..0l2j0i22i30l8.85101.91288..96229…0.0..0.99.366.4……0….1..gws-wiz…….0i71.HU__69ZKIfI
11. http://notdeadyet.org/2012/03/stephens_story.html
12. https://www.washingtonpost.com/opinions/children-are-being-euthanized-in-belgium/2018/08/06/9473bac2-9988-11e8-b60b-1c897f17e185_story.html?utm_term=.0310c1b7da8d

Charlie Gard situations have happened here too

This article was published by National Review online on July 4, 2017.

By Wesley Smith

Wesley Smith

There is a proper international uproar over U.K. doctors winning the right in court to unilaterally remove the infant Charlie Gard from life support. 

Some have commented on the case as if that is a product of the UK’s socialized medical system. It’s not. It is a product of utilitarian bioethics advocacy for the right to refuse wanted life-sustaining treatment — called “futile care” — based on the doctor’s or a hospital bioethics committee’s values on the moral worth of the ill patient’s life and/or the high cost of care. 

Whose baby is Charlie Gard anyway?

Similar authoritarian care withdrawals as has been imposed on Charlie Gard have happened here too — and to very ill patients of all ages. I get into a few of these cases involving infants today over at First Things. 

• There was the Baby Ryan case in Seattle, in which a hospital actually reported a family for child abuse because they obtained an injunction against removing kidney dialysis. In the end, the doctors were wrong that death was imminent. The boy lived four years as a happy, if sickly child, who loved to give high-fives. 
• The parents of Baby Terry in Michigan were stripped of their parental rights for refusing to consent to withdrawing life support. 
• In Canada, doctors treating Baby Joseph insisted on the right to remove life support from a terminally ill baby and refused a tracheotomy that would have permitted the baby to go home to die with his family. Priests for Life eventually paid for the baby to be flown to the USA for the procedure, which was successful. Joseph died several months later in his parents arms. 

Charlie Gard

The Charlie Gard case is unique in only one respect: It is the only futile care case I know of in which the hospital and the law is preventing discharge to another facility or allowing the patient to go home to die. From, “Whose Baby is Charlie Gard, Anyway?” 

The refusal to allow Charlie’s parents to remove their baby boy from the hospital is an act of bioethical aggression that will extend futile-care controversies, creating a duty to die at the time and place of doctors’ choosing.  

And that raises a crucial liberty question: Whose baby is Charlie Gard? His parents’? Or are sick babies — and others facing futile-care impositions — ultimately owned by the hospital and the state? 

Again. This isn’t about socialism — although that issue is relevant. More, it is about cost containment — including in free-market systems — and the attempt by the bioethics movement and medical intelligentsia to replace the equality/sanctity of life ethic with a more utilitarian “quality of life” view.

Whose baby is Charlie Gard, anyway?

This article was written by Wesley Smith and published by the National Review online July 4, 2017

Wesley Smith

By Wesley Smith

The time has come for your baby to die,” a doctor told the grieving parents of a catastrophically ill baby. No, this wasn’t the ongoing Charlie Gard case—so prominent in the news today—in which United Kingdom doctors and judges have told Charlie’s parents that their son’s life support will be removed, no matter what they want. (Charlie has a rare terminal mitochondrial disorder.) Rather, that blunt declaration was uttered in 1994 in Spokane, by a doctor to the parents of Ryan Nguyen, who—born at just twenty-three-weeks gestation—was on kidney dialysis and struggling for his life.

Then as now, doctors declared that further life-sustaining treatment of the child was “futile” and would only prolong his suffering. Then as now, desperate parents sought court relief against their son’s being pushed into the grave sooner rather than later. But then, unlike now, a court in Ryan’s case temporarily blocked the removal of treatment, pending trial.

The court never decided who had ultimate say over Ryan’s care, his parents or medical professionals, because his treatment was transferred to a different doctor who did not view his case as futile. Ryan was soon weaned off dialysis and survived for more than four years, a time in which he was a generally happy, if sickly, child who liked to give “high fives.” Had his original doctors successfully imposed their futile-care philosophy on their patient and his parents, Ryan would have died before he’d truly had a chance to live.

Before Baby Ryan’s ordeal, the parents of “Baby Terry”—also born after twenty-three weeks gestation—faced a similar ordeal. The ethics committee at the Hurley Medical Center in Flint, Michigan weighed in on August 9, 1993, opining that to honor the parents’ desire to continue Baby Terry’s treatment “would be contrary to medical judgment and to moral and ethical beliefs of physicians caring for the patient” (my emphasis). In other words, when it came to choosing between the values of the parents—based in large part on their religious faith—and the values of doctors and hospital bioethicists, the state argued that only the latter matters.

Joseph Maraachli with his mother, Sana.

On that basis alone, a judge found Terry’s parents unfit to make health-care decisions for Terry and stripped them of their parental rights. He awarded temporary custody to the maternal great-aunt, who had previously stated her willingness to obey the doctors. Before that could happen, the infant died in his mother’s arms, aged two-and-a-half months.

In 2011, a similar struggle hit the headlines. Ten-month-old Joseph Maraachli was diagnosed with a terminal and progressively debilitating neurological disease. He was being cared for in a London, Ontario ICU when doctors told his parents, Moe Marraachli and Sana Nader, that they were going to withdraw all life-sustaining care.

Moe and Sana vehemently disagreed, and a bitter dispute erupted between them and the hospital’s doctors and administrators over continuing Joseph’s care. There were two areas of disagreement. First, there was the hospital’s stated intention to end all life-sustaining treatment. Second, when Moe and Sana asked doctors to perform a tracheotomy so that Joseph could be taken home, the doctors refused, claiming such a procedure was medically and ethically unwarranted.

Litigation ensued. The bitter impasse was broken when the American nonprofit organization Priests for Life paid to transfer Joseph to a hospital in St. Louis that was willing to perform the surgery. The operation was a success, and Joseph was brought home, where he died peacefully in his sleep five months later.

Charlie with his parents

These, Charlie’s, and many other similar cases I could recite, involving profoundly ill people of all ages, are examples of what is known in the bioethics trade as “futile care” or “medical futility”—or, as I call it, futile-care theory. FCT authorizes doctors to refuse or withdraw wanted life-sustaining medical treatment over the objections of family and patients when the doctors and/or a bioethics committee believe that the patient’s quality of life makes that life not worth living—or, lurking in the subtext, not worth the resources required to sustain it.

A couple of important points need to be made: We are not talking about an intervention without a potential physiological benefit to the patient—a medical determination. Rather, FCT constitutes a value judgment. As bioethicist Dr. Stuart Youngner once put it, “futility determinations will inevitably involve value judgments about: 1) whether low probability chances are worth taking; and 2) whether certain lives are of a quality worth living.”

Worse, FCT empowers strangers to make medicine’s most important and intimate health-care decisions. Deciding whether to accept or reject life-sustaining care is one of the most difficult medical choices. Under FCT, a patient’s decision—whether it be the desire of an infant patient’s guardians or written in an adult patient’s advance directive—matters less than institutional and professional opinions.

Given all that, Charlie Gard’s heartbreaking situation is not surprising. However, until Charlie’s case, the patient or family has always had the option of finding alternative care. The hospital refusing Ryan’s dialysis did not seek to prevent his transfer. Neither did the hospital in the Baby Joseph controversy.

This is where Charlie Gard’s case is breaking new and even more authoritarian ground. Not only are doctors and judges forcing Charlie off life-support; they are also declaring that their ethics rule over Charlie’s life, even if the parents—Chris and Connie Gard—find alternative care. As far as I know, this is unprecedented in futile-care controversies.

Chris and Connie have raised more than $1 million through crowdfunding to pay for Charlie to be flown to the United States for an experimental treatment that has shown some potential in other mitochondrial conditions. If that course proves impossible, they just want to take their baby home so he can die there instead of in a pediatric ICU. But the hospital administration refuses to permit Charlie to be discharged! And the courts have agreed, based on a determination of what doctors and lawyers believe to be Charlie’s “best interests.”

The only silver lining in this tragedy is that a very sick baby’s life still has the power to move hearts. Not only have Chris and Connie received tremendous popular support internationally, but they are also being backed by two of the most visible leaders in the world: Pope Francis and Donald Trump.

The refusal to allow Charlie’s parents to remove their baby boy from the hospital is an act of bioethical aggression that will extend futile-care controversies, creating a duty to die at the time and place of doctors’ choosing. And that raises a crucial liberty question: Whose baby is Charlie Gard? His parents’? Or are sick babies—and others facing futile-care impositions—ultimately owned by the hospital and the state?

Wesley J. Smith is a senior fellow at the Discovery Institute’s Center on Human Exceptionalism and a consultant to the Patients Rights Council. His most recent book is Culture of Death: The Age of “Do Harm” Medicine.