NRL News

Connie Yates tells the inside story behind what was not done for little Charlie Gard

by | Jul 24, 2017

By Dave Andrusko

We posted earlier today the sad, sad news that based on the most recent MRI scan, Connie Yates and Chris Gard concluded that their precious baby Charlie’s condition had so deteriorated they believed it was time “to let our son go.”

But if you read Connie’s full statement to Justice Nicholas Francis, it is hard to miss (to put it politely) how deceiving she believe Great Ormond Street Hospital (GOSH) had been. Let me highlight five of the points she made to Justice Francis.

#1. Just to be clear, not only was Charlie not “brain dead,” he “still responds to us, even now.”

#2. “The American [Dr. Michio Hirano] and Italian team [presumably Dr. Bertini, who is mentioned later] were still willing to treat Charlie after reviewing the MRI head scan from July 2017 as they still felt that there was a chance of meaningful improvement in Charlie’s brain. However, 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.”

Six months of non-treatment, to be precise.

“His muscles were in pretty good shape in January, although obviously weaker than a child of similar age, and his brain scan was that of a relatively normal child of his age. He may well have had some disabilities later on in life but his quality of life could have been improved greatly.”

#3. “[B]ut after reviewing the recent muscle MRI it was considered that Charlie’s muscles have deteriorated to the extent that it is largely irreversible and, were treatment to work, his quality of life would now not be one which we would want for our precious little boy.

“They [the outside physicians] both agreed that treatment should have been started sooner.”

It gets worse for the hospital:

#4. #4. Why was it that his “treatment was not commenced in January or April this year”? Because “Charlie was found to have ‘irreversible brain damage’ and treatment was considered as ‘futile’. Dr Hirano and Dr Bertini, together with other internationally renowned paediatric neurologists have now reviewed Charlie’s MRI’s and EEG’s which were performed in January and April respectively, and they have confirmed that these MRI’s and EEG’s showed NO actual evidence of irreversible brain damage.”

Read the next paragraph carefully:

“Unfortunately Professor Hirano did not have access to the raw data and he based what he said in April on reports. We did not have access to these second opinions before the initial trial [in which Justice Francis ruled Charlie should be “allowed to die with dignity], hence why we are where we are today. Had we had the opportunity to have raw data of the MRIs and EEGs independently reviewed, we are convinced Charlie would be on treatment now and improving all the time.” (My emphases.)

We know GOSH fought relentlessly against any outsiders seeing Charlie’s medical records. Connie Yates’ statement raises profound and deeply disturbing questions that are unlikely ever to be fully answered.

#5. “However, we are now in July and our poor boy has been left to just lie in hospital for months without any treatment whilst lengthy court battles have been fought. We have been told time and time again that Charlie has a ‘progressive disease’ but rather than allow treatment for him with a medication that was widely accepted to have no side effects [the nucleoside therapy Dr. Hirano had patented which he would have used with Charlie had Justice Francis allowed Charlie to be transported to the United States], Charlie has been left with his illness to deteriorate, sadly, to the point of no return.”

We (or at least I) have always assumed that Charlie was going to die relatively soon, that the treatment Dr. Hirano would administer could only increase his lifespan a bit along with improving Charlie’s quality of life. The question was how to persuade the courts that it was not their decision to make, but Connie’s and Chris’s.

But Connie’s statement tells us that back in January “Charlie’s muscles were in pretty good shape …although obviously weaker than a child of similar age, and his brain scan was that of a relatively normal child of his age. He may well have had some disabilities later on in life but his quality of life could have been improved greatly.”

That is, had he been treated.

In addition, remember the emotional crux of the case that GOSH and Justice Francis made against moving Charlie was that he would suffer. But as Connie said today, “There has never been any proof that he was and we still don’t think that he’s in pain or suffering to this day.”

The real reason, I suspect, for the relentless negativity, the ferocious resistance to giving Charlie a chance, was simple: medical and jurisprudential arrogance and the conviction the hospital broadcast for months: Charlie “has no quality of life and no real prospect of any quality of life.”

There is little to no chance that any outsider will get even a peek inside the hospital’s decision-making process. My guess is there is a very good–as in self-preserving–reason to keep that a secret.

Can you imagine any couple fighting any harder for their child than Chris and Connie? I can’t.

Categories: Infants