An Update on Charlie Gard: brain scan and EEG taken, more tests to follow

By Dave Andrusko

Lots to report about little Charlie Gard whose parents are fighting a famous London-based hospital which insists that Charlie’s ventilator be removed and the nearly one-year-old be “allowed to die with dignity.”

#1. On Sunday the first scans of Charlie’s brain were taken since March 30. As we’ve reported on a daily basis, Dr. Michio Hirano, a world renowned expert in Charlie’s rare form of mitochondrial depletion syndrome, went directly the Great Ormond Street Hospital (GOSH) on Monday where he examined the scans and other relevant test results. He’d come over from the United States to examine Charlie and consult with an outside expert from the Bambino Gesu Hospital in Rome, and with staff at GOSH. The meeting included what was described as an “independent chair.”

Connie Yates, Charlie’s mother, was allowed to attend the five-hour meeting that ended at 1pm, London time. Here is her summary:

‘As stated in court, we asked our experts what they required, and Dr Hirano requested that Charlie have a new MRI and also a 30 minute EEG [electroencephalogram]. Gosh preferred a longer EEG which the judge ordered. Our son has now undergone the scans. We have facilitated the experts in every possible way. Charlie will be having some more tests shortly.’

The scan reportedly left Connie and Chris Gard feeling “optimistic.”

#2. Dr. Hirano and the physician from the “Pope’s hospital” (Bambino Gesu Hospital) met today with GOSH staff. A transcript from their meeting will be given to the presiding judge, Justice Nicholas Francis.

Justice Francis, who is conducting the hearings in the Family Division of the High Court in London, has not been coy. He agrees whole-heartedly with the hospital’s conclusion that nothing can be done for Charlie and his impatience with those who disagree is not hard to read.

But last Thursday, testifying at a hearing in London via videoconferencing, Dr. Hirano told Justice Francis (as summarized by CNN)

that the baby’s MRI scan did not necessarily indicate structural damage to the brain. He said there was an “11% to 56% chance of clinically meaningful improvement” in muscular function with the proposed treatment. Hirano added that keeping Charlie on a ventilator would not cause him harm because he did not seem to be in any significant pain.

Dr. Hirano added that he expected a “small but significant” improvement in Charlie’s brain function. GOSH’s position?

‘It has been and remains the unanimous view of all of those caring for Charlie at Great Ormond Street that withdrawal of ventilation and palliative care are all that the hospital can offer him consistent with his welfare.

‘That is because in the view of his treating team and all those from whom GOSH obtained second opinions, he has no quality of life and no real prospect of any quality of life.’

(Underlining added.)

#3. Justice Francis will hold further hearings later this month following this week’s “specialist gathering,” around July 24-25. He will rule on the parents’ request that they be allowed to take Charlie out of GOSH and fly him to the United States to the Columbia University Medical Center where he would be treated with nucleoside therapy, which Dr. Hirano pioneered. The Bambino Gesu Hospital has also volunteered to treat Charlie.

Funding for the many expenses involved has been raised by a GoFundMe Facebook program which Connie and Chris began in January. And finally

#4. NRL News Today has written a number of posts contrasting the top-down approach of British medicine, the autonomy of which is bolstered by Europe’s fascination with Children’s Rights, with American healthcare. As Cambridge legal scholar Claire Fenton-Glynn has told many American outlets, when there is a dispute between a hospital and parents, a British court “doesn’t start with the presumption that the parents are right.”

Or, more specifically, they don’t begin with the presumption that parents are the first line of defense to ensure their child’s rights or are in the best position to determine what is in his or her “best interests.”

D.J. Tice, a columnist for my home town paper, the (Minneapolis) Star-Tribune, made a keen observation this week about the hospital’s presumption and why that matters in deciding Charlie’s fate:

In Charlie’s case, it simply would be easier to side with the London medical experts if his parents were fighting to deny their child treatment …

But it is GOSH that is fighting to deny Charlie treatment, not Connie and Chris.

As of this afternoon, I am still not clear what the “more tests” are that Connie alluded to. But any test that gives Chris and Connie the possibility of combating the overwhelmingly negative presumptions shared by GOSH and Justice Francis is welcome.