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UK Prime Minister May

Charlie Gard’s desperate case for release from a London hospital before losing life-support was again made in the British parliament today, as seen in video provided by the Mirror. The response of the British Prime Minister was not encouraging.

MP Seema Malhotra addressed Prime Minister Theresa May on behalf of west London constituents Chris Gard and Connie Yates. The couple has sought since January to get their seriously declining  baby boy to the United States to try an experimental oral medication.

Eleven-month-old Charlie has a rare and debilitating chromosomal condition in which his cells cannot replenish essential energy. A natural compound, orally administered, has shown some success as a treatment in the United States.

Court action on behalf of the parents failed to uphold their objections to the Great Ormond Street Hospital’s determination that Charlie be removed from a respirator and medically assisted nutrition, effective immediately. However, last Tuesday, the hospital vaguely promised “not to rush” the process. As of the 4th of July, a Facebook-posted photo of the Gard family indicated Charlie was still alive.

MP Malhotra,
pleads for Charlie

MP Malhotra asked the prime minister for intervention on behalf of Charlie, who has been hospitalized since October. She said

“I understand the chances of improvement for Charlie are low but doctors would be able to say within three months whether Charlie is responding and whether that change is clinically beneficial. If there is any room for discretion within the court rulings for Great Ormond Street to allow Charlie to leave and to transfer his care to doctors at Columbia University, and he is sufficiently stable to receive treatment, would the Prime Minister do all she can to bring the appropriate people together to try and make this happen?”

Prime Minister Theresa May did not commit to intervening, citing the understandable “difficulty” of the situation for both parents and doctors. She then asserted she was

“confident that Great Ormond Street Hospital have and always will consider any offers or new information that has come forward with consideration of the well-being of a desperately-ill child.”

Prime Minister May’s response was the opposite of Pope Francis’ and President Trump’s who both tweeted support for the parents, see here.

TRANSFER TO ROME HOSPITAL REJECTED
Yesterday Crux news reported that the hospital has rejected the offer of the Bambino Gesu children’s hospital in Rome to takeover Charlie’s care.

Bambino Gesù (in English, Baby Jesus) had put out a statement on Monday that the hospital’s president, Mariella Enoc, instructed their health director to ask GOSH if Charlie could be moved to them.

Enoc said that GOSH

told us that, for legal reasons, the baby can’t be transferred to us. That’s one more sad note.” [However]…We are close to the parents in prayer and, if this is their desire, [still] willing to take their child, for the time he has left to live.”

On Monday Italian Cardinal Elio Sgreccia, former President of the Pontifical Academy for Life, analyzed little Charlie Gard’s case and offered “10 critical points” for consideration in the Italian daily La Stampa.

The Cardinal criticized the improper “dynamic” between the decisions of the medical team and the will of the parents as well as the ruling of the European Court of Human Rights, for “assuming a purely procedural position,” instead of examining “passive euthanasia on a new-born.

Even if experimental treatment is withheld from Charlie, he is owed the provision of life support services. “A person affected by an ailment considered, in the present state of medicine, as incurable,” the Cardinal wrote, “is paradoxically the subject that, more than any other, has the right to request and obtain continuous assistance and care, attention and devotion.”

Charlie Gard’s parents, bedside, July 3”

In a Greek tragedy or Shakespearean play, a “Deus ex machina” ending is the resolution of a seemingly unresolvable situation with an unanticipated “intervention by the gods.”

In the tragic real life-and-death drama of baby Charlie Gard, facing court-supported withdrawal of hospital-administered life-support, surprising recent interventions via Twitter have been very welcome.

We can only hope that support from Pope Francis and President Trump can save Chris Gard’s and Connie Yates’s little boy from a hospital that insists he should “die with dignity.”

Eleven-month-old Charlie has a rare and debilitating chromosomal condition in which his cells cannot replenish essential energy. A natural compound, orally administered, has shown some success as a treatment in the United States. Chris and Connie have been working feverishly since January to get their son to the U.S. for that alternative treatment. Over their strenuous objections, however, they had faced the court-ordered death of their son this past weekend.

Pope Francis

But Pope Francis said on Twitter that “to defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.” The Pontiff also tweeted that he prays for them [Charlie’s family], “hoping that their desire to accompany and care for their own child to the end is not ignored.”

President Donald Trump tweeted, “if we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.” The Washington Examiner reported this Monday from White House media affairs director, Helen Ferre:

“Although the president himself has not spoken to the family, he does not want to pressure them in any way, members of the administration have spoken to the family in calls facilitated by the British government.”

President Trump

Following the news of Vatican and American offers of support, a spokesman for the family said: “Chris and Connie are overwhelmed with emotion that President Trump and the Pope have spoken publicly of their support. Their kind words have given them so much comfort. They remain at Charlie’s bedside and his condition remains stable.”

BACKGROUND
Between April and June, rulings from the European Court of Human Rights, and three UK courts, supported the “futile care” assertion of the Great Ormond Street Hospital (GOSH) that Charlie’s very “existence” there was “inhuman” and it was in his “best interests” that life-support be discontinued.

Orders to unplug his respirator and give only palliative care were actionable last Friday, but at press time Charlie is presumably still alive and the status of life-support unknown.

Months of public protests, petitions to UK officials and nearly $1.8 million in financial pledges have seemed ineffectual and unable to engage the concern of mainstream media to the bullying of Charlie’s parents.

That all changed when support for their plight came this weekend from the two of the most influential voices in the world.

In addition, on Tuesday, the UK Metro news revealed that both an unnamed hospital in the US and the Vatican’s Pediatric Hospital, Bambino Gesu, have offered to treat Charlie Gard for free in order to prevent Great Ormond Street Hospital from ending his life.

WHO DECIDES?
These high-profile developments have initiated more and more media attention to Charlie and the fundamental question of the inviolability of parental rights.

Arturo Estopinan with son treated for similar condition that Charlie Gard has

The Daily Mail reported on the debate over Charlie Gard held on Tuesdays’ Good Morning Britain TV show, featuring Arturo Estopinan, a Congressional aide from Baltimore.

Estopinan said his son would be dead now if they had lived in the UK. Arturino, Jr. was given two months to live in 2011 when he was immobile, except for movement of his eyes. Now six years later, after the U.S. oral treatment, he is “a happy boy” who “can move his hands, fingers, feet and arms.”

Estopinan and his wife Olga have become close friends of Chris and Connie since their son has a condition similar to Charlie’s and was aided by the same innovative oral medication sought for Charlie.

On the show, Estopinan was opposed by a British physician who asserted that “to extend Charlie’s life will create more suffering…sometimes real parental love is letting go.

Mr. Estopinan strongly objected, saying,

“What right do you have to play God?… sir, your position is 100% wrong…my son is a happy boy…on a ventilator five years…and much improved from his [immobile] condition.”

Also in solidarity with the Gard family is Terri Schiavo’s brother, Bobby Schindler, whose Life & Hope Foundation works to support the medically fragile. He said, “At issue is whether [Great Britain’s system of] universal healthcare means that bureaucrats and judges will determine appropriate treatment, or whether parents like Charlie’s with the energy, finances, and physicians to care for their child will be allowed to do so.”

Bioethics author Wesley J. Smith also strongly criticized the UK’s position against Charlie as “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?”

Estopinan believes that President Trump’s offer has “saved” Charlie. It is yet to be seen, however, whether modern “deus ex machina” interventions can rescue Charlie from the UK government’s death grip.

Charlie with dad yesterday

In an eleventh hour development, London’s Great Ormond Street Hospital (GOSH) has given Charlie Gard’s parents more time to say goodbye to their son, reports the UK Daily MailOnline .

Baby Charlie’s hospital respirator was scheduled to be shut off Friday. He would be turning eleven months on July 4, and suffers from a rare and very debilitating chromosomal condition, mitochondrial depletion syndrome (MDS).  His parents since January have fought to get him released from GOSH to get experimental oral treatment available at an undisclosed U. S. hospital.

The delay of undetermined length from GOSH came after the release of a video message Thursday in which Connie Yates and Chris Gard accused their son’s doctors of “rushing” them and preventing all their family from being present to say goodbye to Charlie.

Connie and Chris told MailOnline Thursday that the ‘heartless’ doctors have refused to let him come home to die. The couple’s “final wish” for Charlie has been blocked said his mother: ‘We promised our little boy every single day that we would take him home.” Connie released this statement Friday,

 “We have been in talks today with Great Ormond Street and they have agreed to give us a little bit more time with Charlie. We are really grateful for all the support from the public at this extremely difficult time. We’re making precious memories that we can treasure forever with very heavy hearts. Please respect our privacy while we prepare to say the final goodbye to our son Charlie.” 

In late April, Prime Minister Theresa May received a petition with more than 110,000 signatures, asking that Charlie be released from the hospital to go overseas for pioneering MDS treatment. But GOSH dug in its heels, insisting Charlie had developed irreversible brain damage, was likely in pain, and that his very existence has “no benefit.”

GOSH attorney Katharine Gollup insisted, “It is inhuman to permit that condition to continue.”

Charlie’s parents’ decision-making was superceded under Britain’s Children Act of 1989 (updated in 2004) wherein the child’s “welfare” is always paramount and determinations as to what is “best interests” are made by “experts.”

In an April 11 ruling, UK Family Court Judge Nicholas Francis proclaimed that there was no scientific basis that the American treatment would help baby Charlie, even though this course of action had once been considered a possibility by GOSH. Since the infant would not be any better off, the judge with the “heaviest of hearts,” he said but with “complete conviction”ruled death was “in Charlie’s best interests” and he should be permitted “to die with dignity.”

Despite its obvious conflict with Charlie’s rights to life, liberty and parental supervision under the European Convention on Human Rights, Judge Francis’ ruling has been upheld in the UK Court of Appeal, UK Supreme Court, and European Court of Human Rights.

WORLDWIDE INTEREST INCREASING
Notable columnists are increasingly posting critiques of the UK’s “utilitarian” handling of Charlie’s case. [See Ed Morrissey here and Ian Tuttle here.]

In Britain, many have taken to Twitter to vent their anger at GOSH with some promising to end their charitable donations over the hospital’s treatment of Charlie.

“Charlie’s Army” of supporters across the globe have continued to pledge financial support and now are expressing their grief and solidarity using the hashtag #JeSuisCharlieGard [I AM CHARLIE GARD].

Charlie’s parents are believed to be Catholic and Charlie was photographed recently clutching a St. Jude pendant – the patron saint of lost causes. Catholic groups worldwide called Charlie’s fate ‘heartbreaking’ and ‘draconian’ with vigils held for him in various Italian cities last night. His plight has had mass press coverage in Italy and even reached the Vatican where Pope Francis was asked to pray for Charlie.

Charlie rests with parents, before hospital life-support ends Friday

In a heartbreaking Youtube posting today, Charlie Gard’s parents said life-support for him ends tomorrow and that the Great Ormond Street Hospital [GOSH] will not allow them to bring Charlie home to die.

Chris Gard and Connie Yates said 10-month-old Charlie, who suffers from a form of mitochondrial disease which causes progressive muscle weakness, will die Friday, “knowing he was loved by thousands.”

The parents have battled since January to take Charlie to the United States for an experimental treatment that has helped other patients with this condition. GOSH was at first supportive of that treatment, but reversed their position in January, claiming, in effect, that Charlie was so brain damaged as to be beyond anything but pulling the plug on his respirator.

In the somber video, Charlie’s devastated parents revealed that they had talked with GOSH, and —contrary to the hospital’s official press statement yesterday about their being “no rush“–Charlie “will die tomorrow.” Chris bemoaned that they are not even allowed a delay to the weekend, so that Gard relatives can travel to be there.

According to Connie, since November, when GOSH began discussing Charlie’s palliative care/death, Connie and Chris always expressed their intent for him to die at home. The other options were for Charlie to die at GOSH or at hospice, but Charlie’s mom insists that in all of the many discussions about palliative care, they had always said their choice was to have their baby spend his final hours at home.

The Guardian reports that in a Facebook  post on Thursday, the couple said they were spending their “last precious hours” with their son. “We’re not allowed to choose if our son lives and we’re not allowed to choose when or where Charlie dies,” they wrote.

“We and most importantly Charlie have been massively let down throughout this whole process. Charlie will die tomorrow knowing that he was loved by thousands … thank you to everyone for all your support.

Tuesday, the European Court of Human Rights (ECHR) refused to take up an appeal by Charlie’s parents against the UK Supreme Court, which ruled that Charlie must stay in GOSH and have his life-support removed to “die with dignity.” Ironically, the UK supreme Court in 2012 and ECHR in 2015 have both refused to issue a right to assisted suicide (“die with dignity”).

The fact that Charlie’s parents were prohibited from taking Charlie out of hospital to travel to a new set of doctors in the United States has more than baffled the public, it has outraged them. Over 83,000 people internationally have pledged $1.78 million to cover the overseas trip expenses.

The outpouring of support for Charlie Gard and his family did not hold sway with courts. Euthanasia, and government control of decisions that properly belong to the family are at the heart of this tragedy. An incisive article about this comes from Matt Walsh.

Charlie’s heroic parents are at the breaking point, with this comment, “Not only are we not allowed to take our son to an expert hospital to save his life, we also can’t choose how or when our son dies.”

Charlie Gard will lose life-support

Charlie Gard, a little baby on life-support with a debilitating genetic disease, has lost his last court battle. His parents’ heroic battle to bring 10-month-old Charlie to the United States for an experimental medication has lost out to a London hospital evaluation that he deserves “death with dignity.”

A majority of seven judges in the European Court of Human Rights (ECHR) Tuesday rejected, as “inadmissible” the plea by Charlie’s parents to overturn three rulings in the UK court system against their son. The ECHR had agreed to intervene June 19th to maintain Charlie’s life-support in the interest of preventing “imminent risk of irreparable harm.”

However, in its ruling, the ECHR “endorsed in substance” the approach by the UK courts and “consequently… considered that it was appropriate to lift the interim measure” which had required doctors to continue providing life support treatment to Charlie.

The ruling was described as “final” and the full document will be released today.

No official statement has yet been found from the UK Supreme Court, which—due only to the ECHR intervention– had extended legal protection for Charlie’s life support through July 10.

BBC health correspondent Fergus Walsh said it is likely Charlie’s life support machine will be turned off within a few days following discussions between the hospital and his family.

Charlie entered Great Ormond Street Hospital in London in October and was diagnosed as suffering from a form of mitochondrial disease that causes progressive muscle weakness and brain damage. Subsequently his parents discovered that 18 people in the United States had been treated with an oral medication of naturally occurring compounds to remedy this rare condition. Reports have not identified the doctor who initially agreed to treat Charlie, but it was noted that his parents were aware that no cure was promised.

ECHR Ruing
The ECHR wrote that the UK courts had concluded, “on the basis of extensive, high-quality expert evidence, that it was most likely Charlie was being exposed to continued pain, suffering and distress and that undergoing experimental treatment with no prospects of success would offer no benefit, and continue to cause him significant harm.”

Charlie’s parents, Connie Yates and Chris Gard, repeatedly rejected the assessment that Charlie was in pain, or that their intended overseas trip would inflict pain.

A spokeswoman for Great Ormond Street Hospital said:

“Our thoughts are with Charlie’s parents on receipt of this news that we know will be very distressing for them. Today’s decision …marks the end of what has been a very difficult process and our priority is to provide every possible support to Charlie’s parents as we prepare for the next steps. There will be no rush …to change Charlie’s care and any future treatment plans will involve careful planning and discussion.”

STATE USURPS PARENTAL ROLE
The main argument offered by the hospital to countermand parental authority was to protect Charlie’s “best interests.” However, attorneys for Charlie’s parents argued that the hospital was basically holding Charlie hostage, violating several articles under the European Convention on Human Rights, including the rights to life, liberty and family privacy.

Charlie’s first–and last– family picnic, took place on the hospital roof garden

However, the British Medical Association views parental decision-making authority over healthcare treatments for their children as not absolute.

“Where doctors believe that parental decisions are not in the best interests of the child, it may be necessary to seek a view from the courts, whilst meanwhile only providing emergency treatment that is essential to preserve life or prevent serious deterioration.”

Dr. Melissa Moschella, a Catholic University of America philosophy professor, warned the Catholic News Agency that Charlie’s situation

“reflects a euthanasia ideology …that says human life is valuable only if it meets certain capacities… It seems to me completely wrongheaded that the state should be stepping in here when the decision that the parents are making is really aimed at the best interests of the child…It’s not crazy, it’s not abusive, it’s not neglectful. It’s the decision of parents who want to, however they can, to give their very sick child a chance for life.”

There are no media reports yet of any response from Charlie’s parents to Tuesday’s tragic ECHR ruling.

Connie and Chris had already indicated that if Charlie did “not get his chance,” the $1.78 million pledged for his U.S. trip would go towards a charity for mitochondrial depletion syndrome (Charlie’s condition).

“We’d like to save other babies and children because these medications have been proven to work and we honestly have so much belief in them.”

Ten month old Charlie Gard is very sick, but he has two awesome champions–his mom, Connie, and dad, Chris, without whom he most certainly would be dead.

Charlie is not only in the unenviable position of being on life-support against the fierce opposition of his London hospital, he is also now at the center of a developing “battle royale” between the European Court of Human Rights (ECHR) and the British court system

At stake are three essential rights for Charlie: to be kept alive, to not be imprisoned [in the hospital] without cause, and to have his health care governed by his parents. These rights are expressed, respectively, by Articles 2, 5, and 8 of the European Convention on Human Rights

The UK Courts, however, have defended what seems indefensible:

  • that a hospital can hold a child hostage and overrule a decision by parents to obtain treatment elsewhere; and
  • that a hospital can determine that death is in the “best interests” of a child.

Further complicating matters is the current UK position on BREXIT (the decision to leave the EU) and decades of legal chafing over British laws and “human rights” rulings  that have been overturned by the ECHR.

Here is just one illustration of the swirling controversy. A hearing Monday in the chambers of the UK Supreme Court was to decide whether the ECHR instruction to keep Charlie on life support would– or even could– be followed.

The panel of three Supreme Court Justices (Hale, Kerr, and Wilson) expressed deep frustration. They said, “By granting a stay, even of short duration, we would in some sense be complicit in directing a course of action which is contrary to Charlie’s best interests.” 

In short, preserving Charlie’s life was not in Charlie’s best interest.

It was then pointed out that if the UK Supreme Court refused ECHR’s instruction to maintain Charlie’s life-support, Britain could be guilty of a violation that would remove them from membership in ECHR.

Thus the UK Supreme Court’s hand was forced. It issued instructions that it would not —yet—be lawful to shut off Charlie’s life support.

But whereas the ECHR said life-support should be continued indefinitely until they issue an expedited ruling, the UK Supreme Court did set a finite shut off date–July 10.

DRAMA DETAILED
Charlie is a virtual prisoner of the London Great Ormond Street Hospital (GOSH), but it didn’t begin that way.

In October 2016, at two months of age, he was brought to GOSH and diagnosed there with a progressively debilitating genetic condition called Mitochondrial Depletion Syndrome, or MDS. (see explanatory video)  The condition is almost always fatal and has no proven cure.

Two families of children with MDS gave moral support to Charlie’s parents, as reported in the UK Express. Brit Peter Smith strongly advocated a pioneering oral medication, called nucleoside bypass therapy, which has helped his own son Maxwell.

Americans Arthur and Olga Estopian have been in constant contact with Charlie’s parents, urging that Charlie get the same bypass treatment which also saved the life of their son, Arturito. (read more here)

What has not been well publicized is that after Charlie’s diagnosis, GOSH doctors themselves were open to providing the bypass medication– if their ethics board approved. (see here) GOSH recognized the new therapy as having shown some success in reversing many of the effects of MDS in sixteen patients in the United States.

Attorney Gollop

HOSPITAL BECOMES HOSTILE
GOSH attorney Katharine Gollop has testified that sometime after Christmas, GOSH reversed course about the experimental medication. They determined Charlie had suffered “irreversible brain damage” and “any chance for amelioration for his condition had now gone.”

Connie claims the MRI did not back that up, but by January GOSH wanted to pull the plug on baby Charlie’s ventilator, with the ominous decree that, “every day that passed was a day not in Charlie’s best interests.”

That remains the hospital’s mantra, as repeated in several court venues. GOSH believes Charlie must be in pain and no cure exists to defend his being kept alive. To them, Charlie is literally better off dead.

Not so for Charlie’s parents, who understand it is unlikely their son will be cured, but who disagree their son is in pain. They initiated a public plea to help get him out of GOSH and to the U.S. for treatment provided by “experts” at a “reputable hospital,” according to Connie. Over 110,000 petitions were sent to the UK government in favor of “Charlie’s fight” as the campaign is called, and over 83,000 individuals worldwide made donations to create a fund of $1.78 million for the overseas trip.

When Connie and Chris went to court, the first judge, Judge Nicholas Francis, backed GOSH’s death sentence. Then the British Court of Appeal and Supreme Court backed up Justice Francis’ ruling. It was at that point that the ECHR took the extraordinary step of accepting the parents’ appeal in the interests of preventing “irreparable harm.”

As reported Monday in the SUN , Connie protests the unreasonableness of blocking Charlie from getting his last chance at help:

“…we are being blocked by one team of doctors to go to another team of doctors… other children have had this [medication], it’s natural compounds that all of us produce, it’s not harmful.

UK courts have painted themselves in a legal corner. Reason is against them, the public is against them and now the ECHR has pounced on their authority.

Thanks in large measure to his steadfast parents, the plug has not been pulled on Charlie Gard—yet.

Bittersweet Father’s Day for dad of Charlie Gard, on life-support under court order

It was a bittersweet first Father’s Day for Charlie Gard’s dad, Chris, and his partner Connie Yates. Yesterday they did not know whether their son’s respirator would be shut off Monday night.

But it won’t be shut off for at least three weeks, under rulings from both the European Court of Human Rights (ECHR) and the UK Supreme Court. The latter has ordered life-support continue until July 10.

At stake is whether the UK parents will be able to take their 10 month old son to the U.S. for experimental therapy for his rare and debilitating mitochondrial depletion disease.

Currently, London’s Great Ormond Street Hospital (GOSH) has insisted they have deduced Charlie’s “best interests” to be staying on the premises, removing his respirator and being allowed to “die with dignity.”

Today ECHR judges in Strasbourg, France, have ordered that Charlie’s life “must be maintained until such time as the Court makes its decision.” This extends their June 13 ruling which had ordered Charlie’s life-sustaining care be kept going at GOSH only until at least midnight tonight.

Now that attorneys for Charlie’s parents have submitted the required “substantive application” (beyond last week’s emergency interim intervention),  the ECHR will review and rule on the matter.

Furthermore, the Court’s press release states that “in light of the exceptional circumstances of the case, the Court has already accorded it priority and will treat the application with the utmost urgency.” No expected date for a ruling was given other than it will be on “an expedited timetable.”

HOSPITAL STILL HOSTILE
With that in mind–and with GOSH legally challenging the authority of the European Court–a three member panel of the UK Supreme Court that had sided with GOSH just last month, has now ordered life-support to continue so that ECHR may rule.

Connie and Chris have lost two rounds of court rulings and then the UK Supreme Court before appealing to the ECHR, whose direct jurisdiction is the UK government, not the hospital. Charlie’s parents have fought to give their son a chance at an oral-medication treatment regimen in the United States that supposedly has helped at least 18 similarly situated patients.

However Charlie’s parents cannot yet breathe easy as this morning’s Supreme Court hearing shows how hostile the hospital is toward letting Charlie live. Chris and Connie have characterized the hospital’s conduct as “inhuman” and maintain a 24/7 presence.

Charlie posed with unused passport

The public continues its outpouring of support for parental decision-making regarding healthcare for their children. The GoFundMe pledges to pay for the overseas trip for Charlie have continued steadily and now more than $1.78 million is pledged.

As the court battles continue over whether UK hospitals may sentence a child to death, Charlie remains alive.  Yesterday, a touching Facebook photo of him with his passport open was posted by his parents.

But, the sad question remains whether Charlie will ever get to the United States for therapy.