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Charlie Gard’s parents, fighting to remove him from London hospital

UPDATE, July 14: Judge announces today he’ll rule July 25, following results from Columbia Univ. neurology prof. Michio Hirano, who will examine Charlie July 17&18 in London hospital.

A decision whether London parents Chris Gard and Connie Yates, will be allowed to leave the country to obtain experimental treatment for their rapidly failing son Charlie  will be held off at least another day or two after a hearing this afternoon in the UK High Court of Justice Nicholas Francis.

That hearing was not without fireworks and a dramatic exit by the parents who vehemently insisted their views had been misrepresented by Justice Francis.

No final court ruling is expected for days, for at least two reasons:

1)   further measurement of Charlie’s head–to verify/repudiate brain loss– was ordered to be provided tomorrow. The hospital is insisting that there has been no growth in the size of Charlie’s skull over the past three months since Judge Francis gave the hospital permission to disconnect Charlie’s ventilator. The parents say flatly that is not so.

2)   an interdisciplinary panel is now to be convened immediately to attempt to bridge the gap between what the hospital is contending and what the parents and other outside experts on their side are saying.

UK Justice Francis

Charlie is very ill. He has an exceptionally rare and debilitating chromosomal condition –encephalomyopathic mitochondrial DNA depletion syndrome (MDDS)–in which his cells cannot replenish essential energy. However 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. to receive that alternative treatment.

New York-Presbyterian Hospital/Columbia University Medical Center and one other unnamed medical facility have offered to treat Charlie, either as an inpatient or by shipping the experimental nucleoside therapy drug to London’s Great Ormond Street Hospital (GOSH). But GOSH insists that the therapy has only worked on a variant of Charlie’s condition and would be pointless, if not also painful to the eleven month old child.

COURT VOLATILITY
Justice Francis emphasized going in that Thursday’s  proceeding was focused solely on new medical developments relevant to Charlie’s current status.

GOSH had requested the hearing after British Prime Minister Theresa May told Parliament she was confident the hospital would not ignore new developments. GOSH subsequently acted to request this hearing after receiving two letters – one from seven doctors and another from an attorney representing Charlie’s parents – claiming the chances of the treatment being successful were higher than previously thought.

Grant Armstrong, the parents’ lawyer in today’s hearing, presented testimony from medical experts that the chances were between 90 and 100% that the treatment being sought in the U.S. could “cross the blood-brain barrier” with as much as a 60% chance of Charlie experiencing muscular improvement, and “meaningful brain recovery.”

Fireworks erupted two hours into the hearing, however, when the judge referenced previous comments to the effect that Charlie’s parents would not want their son to continue living in his current condition were there no prospect of improvement.

According to press accounts, (the Guardian, CNN and AP) Chris Gard punched a table, and Connie exclaimed,

I never said that! We said he’s not in suffering and in pain. If he was we wouldn’t be up here fighting for that.

The judge attempted to clarify that one or the other of the parents had said it, but the couple abruptly left the courtroom. “I thought this [hearing] was supposed to be independent [impartial],” Chris said,

The hearing broke for lunch shortly afterwards and Charlie’s parents subsequently returned.  Justice Francis apologized for the earlier conflict, assuring them that the transcript of what they said has been found and they won’t be misquoted. What exactly he meant by that–for example whether he was retreating from what he had said–was not clear.

OVERSEAS EXPERT REBUTTAL
Questioning of the United States professor of neurology and specialist in mitochondrial disease took place via separate audio and video links. (Under Supreme Court order, none of the medical specialists are named.)

As tweeted by Sky News reporter, Jim Old who was in the courtroom, the unidentified expert said this treatment was the compassionate option. A model using mice genetically altered to match Charlie’s exact genes wouldn’t be available for at least six months.

The expert also pointed to the results so far as showing five out of nine patients with a nearly identical condition were able to reduce the amount of time they spent on a ventilator by eight hours a day or more, and that one patient was weaned off the ventilator altogether.

He  also called into question GOSH’s assertion that Charlie had brain damage, saying that MRI and EEG scans indicated “disorganization of brain activity but that does not necessarily indicate structural damage”.

Ultimately,this U.S. professor rebutted the assessment put to the court in the past that the chances of improving Charlie’s condition were “vanishingly small.”

After some long consultations among the attorneys, the judge announced the need for a multi-disciplinary meeting to take place “in a matter of days” in an attempt to hammer out a “consensus” opinion on how to proceed.

Friday’s court session is set for 2 pm to assess how close both parties are to arranging that meeting.

Fox & Friends with Charlie Gard spox

PARENTS’ ORDEAL CONTINUES
Gard family spokesman, Alisdair Seton Marsden, relayed that Connie and Chris are working under trying conditions “just to give Charlie a chance”…they feel strongly that, “if he’s still fighting, we’re still fighting.”

According to an interview on Fox & Friends this morning with Mr. Marsden, the special compound that Charlie’s parents want him to receive would merely be added to his feeding tube and medical advisors expect a 2-8 week timeline for seeing results. “It’s an additive found in corn flakes, how controversial can that be?” remarked the interviewer.

Mr. Marsden expressed the couple’s deep gratitude for the U.S. hospital offers of aid and the support from President Donald Trump and Vice-President Mike Pence. He revealed that an Air Ambulance had been ready for weeks to usher the family overseas and that the new petition in support of Charlie (citizenGO.org) was racing toward one million signatures.

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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.

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