The parents of Charlie Gard, a terminally ill 11-month-old baby in the UK with a rare genetic condition, have announced they will end their legal fight to take him to the US for treatment. Charlie will now be allowed to die peacefully in less than two weeks.
The incredibly sad and tragic case has garnered headlines for all the wrong reasons. Great Ormond Street Hospital (GOSH) in London, where Charlie has been in care, has been inundated with disgusting and vile abuse.
GOSH is one of the world’s leading children’s hospitals. It treats more than 250,000 patients every year and has the widest range of health services for children in the UK. There are 51 different specialties at the hospital, which treat some of the UK’s sickest children.
When it was founded in 1852, there was no other hospital in the UK dedicated to treating children. Now, GOSH is the envy of the world. And the backlash it has received during the Charlie Gard case, during which the hospital provided the same high level of support they afford all their patients, has been terrible.
Charlie’s case is extremely unique. The toddler has a rare genetic condition called encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). Specifically, the variant Charlie has is called RRM2B deficiency, which affects the brain and muscles. It means his cells can’t make enough energy to power his muscles or brain due to faulty DNA inherited from his parents, Connie Yates and Chris Gard.
MDDS is fatal, with no known cure. Although Charlie was healthy when born on August 4, 2016, he developed severe brain damage and now cannot properly open his eyes or move his limbs.
“We have always paid tribute to the extraordinary courage and strength of Connie Yates and Chris Gard and their devotion to their son,” a spokesperson for GOSH said. “Today our hearts go out to them as they face the most difficult decision that any parent should ever have to make.”
Charlie’s condition considerably worsened over the last few months, to the point where the only humane thing to do was to let him pass in peace. But the situation was complicated when a US doctor called Michio Hirano offered what many claimed to be false hope.
Dr Hirano had claimed that an experimental treatment called nucleoside bypass therapy (NBT) had a small chance of improving Charlie’s condition, although he would never fully recover. Dr Hirano claimed this despite having never visited Charlie. After seeing the result of a new MRI scan last week, Dr Hirano said he could no longer help, leading the parents to announce the end of their legal challenge yesterday.
NBT involves resupplying some of the building blocks of DNA, in an attempt to provide the DNA that Charlie’s cells are missing. But no human or animal with Charlie’s condition has ever been treated with NBT before. At Christmas, Charlie began having seizures, a complication of infantile onset of RRM2B, making treatment all but impossible.
“The entire treating team 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,” GOSH said in a statement (PDF).
Despite numerous attempts to make this clear to Hirano, and multiple attempts to invite him over, he maintained NBT could be successful, despite the assertions of the numerous medical experts at GOSH. It has since emerged that Hirano had financial interests in this treatment.
“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,” the hospital said. “That remains its view of his welfare.”
Charlie’s parents have maintained that an MRI scan showed his brain was normal. Unfortunately, the numerous experts at GOSH – and around the world – have said that is not the case. The disagreement has been understandably heartbreaking for the parents.
“Devastatingly, the information obtained since 13 July gives no cause for optimism,” GOSH continued. “Rather, it confirms that whilst NBT may well assist others in the future, it cannot and could not have assisted Charlie.”
The sad conclusion is that Charlie will die before his first birthday on August 4. But the situation has been made so much worse by various groups and tabloids, who have given his parents tragic false hope. In so doing, the reputation of an incredible hospital that has saved countless lives has been dragged through the mud.