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Posts Tagged ‘UK courts’

US MDDS expert Michio Hirano

Around the world, millions are holding their breath during this crucial two day period for baby Charlie Gard, still on life-support in a London hospital, despite the hospital’s strong opposition.

Charlie is being examined onsite Monday by Michio Hirano, a neurologist at Columbia University Medical Center, who is a world-renowned expert in myopathies and other neuromuscular diseases similar to Charlie’s devastating problems, and at least one other outside physician.

Dr. Hirano is meeting with Charlie’s current immediate care team and other specialists, including a doctor from the Vatican children’s hospital.  According to the Daily Mail, the two doctors “will examine Charlie and will have access to his notes and clinical data, including medical images.” Another story suggests a third doctor, from Spain, will also take part in the evaluation.

As reported this morning in the Times/the Brief, “there is still a chance for a mediated settlement” in the legal proceeding surrounding Charlie, because Mr. Justice Francis of the UK High Court said Friday,

that if all parties agreed on Charlie being transferred to the U.S. for treatment, ‘I will agree it with you.’ ”

The problem, obviously, is in the “all” part. It is almost inconceivable that the hospital which has held Charlie virtually hostage will agree to allow him to travel to the U.S. (See below.)

It would appear that the transfer out of London’s Great Ormond Street Hospital (GOSH) for alternative treatment  (sought since January by Charlie’s parents Chris Gard and Connie Yates) can only happen if the original judge now rehearing the matter–Justice Nicholas Francis–becomes convinced:

  1. that a multi-disciplinary panel agrees that recent scientific developments merit a new look at Charlie’s situation, and
  2. GOSH clinicians change their mind that Charlie is in an irredeemable condition, unworthy of experimental therapy.

Charlie Gard has MDDS

That is why, at this moment, a uniquely qualified New York scientist, Dr. Michio Hirano, is in London evaluating Charlie, who has MDDS (Mitochondrial DNA Depletion Syndrome). After thirty years of studying this condition, the Harvard-trained Dr. Hirano has pioneered an oral additive that mitigates the MDDS deficiency in which every cell of the body cannot process and replenish essential energy.

In testimony given Thursday via videoconferencing, Dr. Hirano said there was an “11% to 56% chance of clinically meaningful improvement” in muscular function with the proposed treatment and that he expected a “small but significant” improvement in Charlie’s brain function.

According to the Times’ report, Dr. Hirano is meeting today with the GOSH team treating Charlie,  “and possibly two other specialists – one from the Pope’s pediatric hospital in Rome and one from Barcelona.”

Dr. Hirano was given GOSH privileges and ushered onsite through the back door this morning, reports the Daily Mail. A meeting with all clinicians and Charlie’s mother will take place either today or tomorrow.

The High Court will then rule on Charlie’s case on or about July 25, ironically ten days before Charlie’s first birthday.

PARENTS’ UPHILL BATTLE
GOSH is a children’s hospital whose slogan is “the child first and always.” Here are some excerpts from the website’s updated statement on the Charlie Gard matter.  None of them suggest they are open to releasing Charlie.

  • Our doctors have explored every medical treatment, including experimental nucleoside therapies.
  • Independent medical experts agreed with our clinical team that this treatment would be unjustified.
  • [we’re] bound by the ruling of the High Court which expressly forbids us from transferring Charlie for nucleoside therapy anywhere…
  • The ruling also states that it is in Charlie’s best interests for artificial ventilation to be withdrawn, and for his clinicians to provide him with palliative care only.

Officially, GOSH has not changed its mind about the “futility” of treating Charlie. Its own staff admittedly had considered using Dr. Hirano’s nucleoside bypass therapy on their own premises for Charlie, but reversed course in January, after what they said was a 17 day occurrence of epileptic seizures that left him irreversibly brain-damaged.

Expert testimony last Friday, however, raised doubts that there was MRI confirmation of that. Justice Francis ruled that if Charlie’s parents agreed, another scan could be taken this past weekend.

Also on Friday, Charlie’s parents exploded with frustration in court when the hospital said they should be excluded from this week’s make-or-break physician meetings. The Daily Mail recounts that, after GOSH attorney Katie Gollop said clinicians may not be able to “speak freely” with the couple present, Chris Gard shouted, ”’He’s our son!”

Justice Francis initially agreed with Gollop, but then was persuaded by the argument from the parents’ attorney,

“that it would be unfair for the baby’s mother to be excluded while Great Ormond Street doctors – with their ‘incredibly entrenched view’ of Charlie’s fate – were allowed in.”

The judge granted permission for Connie to attend the meeting with her promise not to “disrupt” the experts’ debate.

Atty Butler-Cole

What continually astounds followers of this saga is how Charlie’s admirable parents are at the mercy of the government, and are denied decision-making rights. Chris and Connie believe strongly that they should be their son’s voice in court proceedings deciding his fate.

Instead, as examined in the Telegraph, Charlie’s “voice” in these adversarial proceedings is a guardian represented by a publicly-appointed attorney with “what looks like a profound conflict of interest.”  The attorney,  whose role is to protect Charlie’s “best interests” in court, has been Victoria Butler-Cole, chairman of Britain’s Compassion in Dying, the sister body of Dignity in Dying, formerly known as the Voluntary Euthanasia Society. This disturbs the Gard family, according to the Telegraph’s inside source.

Against unprecedented adversity, Chris and Connie have fought to secure “just a chance” for Charlie to get the pioneering MDDS oral treatment from Dr. Hirano. Today, against all odds, that result is closer than ever.

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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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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.”

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Baby Charlie Gard: another last minute reprieve for his life

Thanks to what has been termed an “extraordinary” measure by the European Court of Human Rights in Strasbourg, France, Charlie Gard will not be immediately removed from his ventilator.

The 11th hour intervention puts on hold until at least next week a decision by three members of the UK Supreme Court. Earlier this week those justices ordered that Charlie would remain on the Great Ormond Street Hospital (GOSH) ventilator only until today, Friday, as his parents, Connie Yates and Chris Gard, brought a plea asking the European Court of Human Rights to intervene.

The Mirror reported that in an emergency hearing at the High Court, seven judges took up the plea Charlie’s parents filed for “an urgent interim measure to save Charlie’s life under Rule 39 of the Rules of Court.” No decision has been made whether this High Court will take the case for review.  A statement from the court said:

“Today, the European Court of Human Rights decided to indicate to the United Kingdom Government that, in the interests of the parties and the proper conduct of the proceedings before it, they should provide Charlie Gard with such treatment and nursing care as may be appropriate to ensure that he suffers the least distress and retains the greatest dignity consistent, insofar as possible, with maintaining life until midnight on Tuesday 13 June 2017.”

After Thursday’s UK Supreme Court decision, hospital doctors were ordered to maintain an additional 24 hours of ventilator life-support. “A ruling by the European Court of Human Rights would be binding on the UK Government, rather than Great Ormond Street Hospital,” The Mirror reported.

As many pro-lifers are aware, 10-month-old Charlie’s medical condition is grave. He suffers from a rare, genetically-caused disease, so rare there are only sixteen known cases in the world. Charlie’s parents sought to remove him from the hospital to try “nucleoside bypass” oral therapy in the U.S. But the hospital wouldn’t let Charlie leave, and the courts ruled against Connie Yates and Chris Gard, Charlie’s parents.

Thousands around the world have been riveted to the drama of this young couple devoted to their ailing son.  More than 83,000 have pledged funding for that trip in the amount of $1.5 million.

PARENTAL RIGHTS ON TRIAL
An article yesterday in The Guardian by Owen Bowcott noted that the UK Supreme Court panel of Lady Brenda Hale, Lord Brian Kerr, and Lord Nicholas Wilson concluded, “Established human rights law dictates that the rights of a child should take precedence over the rights of their parent.”

The panel apparently were persuaded by GOSH lead attorney, Katie Gollop, who argued:

“The [alternative therapy in America] would take time and over the weeks and months Charlie would be forced to remain in his [precarious] condition: he can’t see, can’t hear, can’t cry, can’t swallow. He has a mechanism that causes his lungs to go up and down. We don’t know whether he suffers pain … the argument being advanced on behalf of Charlie’s parents was that the child should have no voice and it was entirely for the parents to decide. [That’s] dangerous and it’s power without end.”

As many have pointed out, including lawyers for the parents, by adopting GOSH’s claims, the UK Supreme Court is usurping parental rights— claiming that it (with the hospital) is the “voice” for Charlie with the authority to determine his “best interests.”

The public believes that it is actually this erosion of parental authority which is both dangerous and without any end in sight.

As Bowcott reports, attorney Richard Gordon, representing Connie & Chris, had told the UK Supreme Court:

“These are model parents trying to do all they possibly can for the benefit of their child. Their view on what is best for Charlie differs from the court… We say there’s a boundary beyond which the state cannot simply go without the strongest justification.

Charlie’s parents already have the natural authority to make informed decisions to further his life. Six months ago, they wanted to take him overseas to receive oral medication that seems to be successful for treating the mitochondrial depletion syndrome Charlie suffers from. Yet the hospital has restrained Charlie from getting that treatment while he continued to deteriorate—and now they insist he must die!

The question before the European Court of Human Rights over the weekend is whether the government has overreached in making themselves the ultimate arbiter of Charlie’s “best interests.” Attorney Gordon phrased it this way:

The issue is whether the state has the power to intrude on decisions the parents have made in order to mandate that child’s death before it might come to an end.”

Keep praying for Charlie and his long-suffering parents.

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