And this is the official statement from Great Ormond Street, written by a QC but not in the language you normally get from a QC. I cried when I read it.
http://www.gosh.nhs.uk/file/23731/download?token=TWJkSxZu
This statement cut and paste in two parts -
GOSH’S POSITION STATEMENT
HEARING ON 24 JULY 2017
1. The hearts of all at GOSH go out to Connie Yates and Chris Gard. Over the weekend, they communicated their desire to spend all the time they can with Charlie whilst working with the hospital to formulate the best possible plan for his end of life care. The agony, desolation and bravery of their decision command GOSH’s utmost respect and humble all who work there. Whilst GOSH has striven to work with them throughout, Charlie’s needs have taken priority. It is greatly hoped that in the days ahead, it will be possible to extend to his parents the same quality of care with which Charlie has been provided and to concentrate on the family as a whole.
2. Charlie’s parents have fought long and hard for what they have been led to believe was
a treatment that would give him a chance to be the Charlie he was before the effects of
his illness became evident. Since nucleoside treatment (“NBT”) is not invasive when
added to food and there is no evidence that it has caused significant damage to the TK2
deficient patients to whom it has been administered, they have, rightly and urgently,
sought to know: Why not give Charlie that chance? What does he have to lose? They
feel now, and perhaps will feel for some long time to come, that if only GOSH had
treated Charlie months ago, they would have been spared the impossible decision they
make now.
3. These deeply affecting questions deserve answers. From the moment of his diagnosis
at GOSH, Charlie’s prognosis was known to be bleak. The early infantile onset of his
extraordinarily rare disease, his generalised myopathy and the respiratory failure which
left him dependent on a ventilator, were all factors indicating that his life’s span was
likely to be very limited indeed. Despite the sombre prognosis, GOSH’s mitochondrial
expert contacted counterparts across the world, including Professor Hirano, to explore
the possibility of experimental treatment, NBT.
4. No animal or human with Charlie’s condition, RRM2B deficiency (“RRM2B”), has
been treated with NBT and therefore an application to the Rapid Response Clinical
Ethics Committee was prepared in January. NBT was and is a possible treatment for
GOSH patients suffering with TK2 deficiency (“TK2”), a similar genetic disorder, but
there is a crucial difference between the two conditions. TK2 affects muscle (and is
treated with 2 compounds) whereas RRM2B affects muscle, other organs and brain
(and would be treated with 4 compounds – see GOSH’s Position Statement of 13 July,
paragraph 18).
5. Charlie started having seizures before Christmas, those being a recognised
complication of infantile onset RRM2B. Shortly before the planned ethics committee
application, he suffered increased seizure frequency and likely severe epileptic
encephalopathy. The entire treating team (acknowledged by the mitochondrial centres
in New York and Rome to be their equal) formed the view that Charlie had suffered
irreversible neurological damage and that as a result, any chance that NBT might have
had of benefitting Charlie had departed. That sad conclusion led to the best interests
application made in February and decided by the High Court on 11 April 2017.
6. Charlie’s parents believe that his brain was not damaged, that it was normal on MRI
scan in January and that treatment could have been effective at that time during the
months that followed. There remains no agreement on these issues. GOSH treats
patients and not scans. All aspects of the clinical picture and all of Charlie’s
observations indicated that his brain was irreversibly damaged and that NBT was futile.
Those were the Judge’s findings in April, upheld on appeal in May and on further
appeal in June. As the weeks have passed, the unstoppable effects of Charlie’s
aggressive, progressive, depletive disorder have become plainer to see.
7. At the first hearing in Charlie’s case in March, GOSH’s position was that every day
that passed was a day that was not in his best interests. That remains its view of his
welfare. Even now, Charlie shows physical responses to stressors that some of those
treating him interpret as pain and when two international experts assessed him last
week, they believed that they elicited a pain response. In GOSH’s view there has been
no real change in Charlie’s responsiveness since January. Its fear that his continued
existence has been painful to him has been compounded by the Judge’s finding, in
April, that since his brain became affected by RRM2B, Charlie’s has been an existence
devoid of all benefit and pleasure. If Charlie has had a relationship with the world
around him since his best interests were determined, it has been one of suffering.
