NRL News

All that was wrong in the coverage of Charlie Gard captured in one story

by | Jul 27, 2017

By Dave Andrusko

Charlie Gard and his dad

Charlie Gard and his dad

It is now, tragically, official.

“It is not in Charlie’s best interests for artificial ventilation to continue to be provided to him and it is therefore lawful and in his best interests for it to be withdrawn,” Justice Nicholas Francis ruled today.

In all likelihood, Charlie will be moved tomorrow to an undisclosed hospice.

So much for giving Connie Yates and Chris Gard time to say goodbye to their desperately ill son. So much for Charlie reaching his 1st birthday, August 4. So much for the bedrock proposition that parents may know something more about their child’s “best interests” than a judge and a hospital.

I am going to use this post to dissect Dan Bilefsky’s New York Times story that ran this afternoon about the “resolution.” Except for spelling Charlie’s name correctly, almost everything about the story is wrong, incomplete, and/or misleading.

In other words, the story distills everything that is wrong about the coverage of a little boy who is suffering from an exceedingly rare and debilitating chromosomal condition –encephalomyopathic mitochondrial DNA depletion syndrome (MDDS)–in which his cells cannot replenish essential energy.

Bilefsky wrote

#1. “Earlier this week, Ms. Yates, a caregiver, and Charlie’s father, Chris Gard, a postal worker, ended their monthslong legal battle to get the infant experimental treatment, which could have involved taking him to the United States, acknowledging that the infant’s illness was irreversible and that he should be taken off life support.

“They also accepted that their desire for him to go home for his last days was not possible, their lawyer said.”

Although the world renowned expert in the area of Charlie’s disease said he “still felt that there was a chance of meaningful improvement in Charlie’s brain,” the parents ended their legal battle because Dr. Michio Hirano concluded (according to Connie) that “due to the deterioration in his muscles, there is now no way back for Charlie. Time that has been wasted. It is time that has sadly gone against him.”

True they “accepted” that Charlie would be sent to a hospice, not to their home, but only because they were outgunned. The Great Ormond Street Hospital (GOSH) declared there was no way they could care for Charlie at home. (More about that below.) And, as was the case in every debate, Justice Francis sided with the hospital.

#2. “The case captured the attention of Pope Francis and of President Trump, and underlined the perils of what can happen when a hospital and the parents of a sick child differ fundamentally about treatment and care, and communication between the parties breaks down.”

“Differ fundamentally”? Nothing Connie and Chris offered (through their lawyer) was good enough for GOSH and Justice Francis. Communication will always “breakdown” when one party holds a fistful of aces, the other a pair of deuces. There is no need for the former to compromise and loads of incentives to offer bogus “solutions” that were impossible for Chris and Connie to meet. For example…

#3. “Grant Armstrong, a lawyer for the parents, initially accused the hospital of ‘creating obstacles.’ On Wednesday, however, he said that the family had agreed that Charlie would move to a hospice and had found a team of doctors and nurses willing to care for him until life support was removed after about a week.

“But Great Ormond Street Hospital said that arrangement was not feasible amid concerns that the doctor organizing the care was not a pediatric intensive care specialist.”

The “however” is totally misleading. Mr. Armstrong didn’t retreat from his characterization. Justice Francis’s timetable and the hospital’s unrealistic demands put him up against a wall. For example, GOSH rejected the family’s counter-proposal because, in part, “the doctor organizing the care was not a pediatric intensive care specialist.”

Yet it was nurses from GOSH, presumably very familiar with Charlie’s case, who “offered to work 12-hour shifts on their days off – facilitating the family’s wish,” as the Daily Mail reported. Said Armstrong, “Several nurses from Great Ormond Street have volunteered to assist. May I pay tribute to these nurses.”

Not good enough. (We won’t go into the malarkey about not being able to navigate Charlie’s ventilator up the stairs of Chris and Connie’s flat.)

The hospital, through its attorney, Katie Gollop, said that the “task of finalizing an end of life care plan” for Charlie “must be “safe, it must spare Charlie all pain, and it must protect his dignity. At the same time, the plan must honour his parents’ wishes about two matters in particular namely the time and place of his passing.” As Bilefsky’s story makes clear between the lines, neither of the wishes about those “matters” was “honored.” And lastly

#4. This will be the longest quotes/analyses, because they are both desperately wrong and emblematic of the way GOSH stigmatized any medical authority who dared to disagree with them.

After an M.R.I. scan last week, medical experts concluded that the treatment would no longer be effective, and Charlie’s parents agreed that life support should be withdrawn.

As noted above, Dr. Hirano still believed there was a chance of meaningful improvement in Charlie’s brain.” But because so much time had been wasted (recall that the hospital fought Connie and Chris’s every effort to enroll Charlie in Dr. Hirano’s nucleoside therapy program), his muscles had so deteriorated, “there is now no way back for Charlie.”

The hospital said in a statement that it had also been concerned “to hear the professor state, for the first time, whilst in the witness box,” that he had retained a financial interest in some of the compounds used in the treatments for mitochondrial DNA depletion syndrome.

Get it? Dr. Hirano is just in it for the money. There is a not-so-subtle hint (to put it politely) of a conflict of interest.

In fact, Dr. Hirano stated, “As I disclosed in court on July 13, I have relinquished and have no financial interest in the treatment being developed for Charlie’s condition.”

And, by the way, who is Dr. Hirano? Is he likely hurting for cash or looking for cheap headlines?

According to his bio, he received his B.A. from Harvard College and M.D. from the Albert Einstein College of Medicine. He specializes in myopathies and other neuromuscular disease. Dr. Hirano serves as Chief of the Neuromuscular Division and Co-Director of the Columbia University Medical Center Muscular Dystrophy Association clinic and is Director of the H. Houston Merritt Center for Muscular Dystrophy and Related Diseases.

In addition, “Dr. Hirano serves on the NIH Therapeutic Approaches to Genetic Diseases (TAG) study section, Medical Advisory Committee (MAC) of the Muscular Dystrophy Association, and Scientific Advisory Board of the United Mitochondrial Disease Foundation.”

A hugely qualified physician with loads of credentials.

Of course there was a real conflict of interest–or loyalties–in this case. Victoria Butler-Cole was his court-appointed legal guardian (because Charlie’s parents were/are not presumed to be best qualified to judge what is in their son’s “best interests”).

Charlie’s de factor lawyer is “chairman of Compassion in Dying, a sister organisation to Dignity in Dying which campaigns for a change in the law to make assisted dying legal in the UK. Dignity in Dying used to be called the Voluntary Euthanasia Society,” to quote the Telegraph.

Alas, there is every reason to believe Charlie will die on Friday. We will update you on developments as quickly as we can.

Pray for Charlie, Connie, and Chris.

Categories: Infants