Charlie Gard gets ‘make or break’ exam by experts, including Dr. Hirano

By Kathy Ostrowski, Policy & Research Director, Kansans for Life

Charlie Gard’s parents have released this heartbreaking image of their terminally ill son as they spend their last few hours with him (Picture: Featureworld)

(Picture: Featureworld)

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, in spite of  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 agree 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.

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 their 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.

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.” That 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.