The parents of baby Charlie Gard have set out to debunk assertions about Charlie’s development, comfort, and quality of life, as they fight to have their son released from hospital to receive experimental treatment in the U.S., standing by their position that as long as Charlie is still fighting “then we’re still fighting”.
Charlie Gard, who suffers from a rare genetic disorder, is being treated at London’s Great Ormond Street Hospital for Children. Charlie’s parents have raised £1.3 million ($1.7 million) to take their son to the U.S. for potentially life-saving treatment, but hospital administrators have fought Chris Gard and Connie Yates for months through several courts to have Charlie’s life support removed.
Charlie’s fight for life received high-profile support from U.S. President Donald Trump, Vice President Mike Pence, and Pope Francis, with Rome’s Bambino Gesu hospital, a Vatican-run children’s hospital, offering to receive and treat Charlie – an offer which was rejected by the British government “for legal reasons”.
On Friday, Great Ormond Street Hospital applied again to the High Court after “claims of new evidence relating to potential treatment for his condition”. On Monday, High Court judge Mr. Justice Francis adjourned the case until Thursday, ordering Charlie’s parents to file written evidence by Wednesday.
Connie and Chris said in a statement: “We, Charlie’s parents, are ordinary people in an extraordinary situation. Our son Charlie is stable, and a chance has been offered that might help him get better. We as Charlie’s parents, backed by specialist doctors and hospitals around the world, don’t want to turn this chance down.
“All we ask is the opportunity to do our duty by our child, and we should be able to take him to another hospital who want to treat him and save his life. As long as he continues fighting, how could we do anything but continue to fight for him? If he’s still fighting, then we’re still fighting.”
Addressing perceptions about their son’s quality of life, comfort, and the likelihood of the medication working, Connie and Chris have set out to clarify those ‘myths’:
– Myth 1 – Charlie is in pain and is suffering –
Response: “There is no clear medical evidence that Charlie is in pain. The Supreme Court stated that they were not certain Charlie was/is in pain. What we do know is that he has been stable throughout, his vital signs are stable, his heartbeat is normal which is a recognised sign that there is no significant pain.
“Charlie was not on pain controlling medication for the first 8 months at GOSH, including before and during the High Court hearing. Simply put there is no proof he is in pain, and the facts suggest otherwise.”
– Myth 2 – His parents are unnecessarily prolonging his pain and suffering –
Response: “The proposed treatment is non-invasive, it is administered via his milk. If there is no proof he is in pain – see above – then to say his parents are prolonging his pain and suffering is wrong – they are working to improve his life. They are seeking treatment that is intended to make him (much) better off.
“Charlie’s parents are only proposing a 3 month trial period for the treatment to be administered, after which it would be clear to see if he responds to treatment.
“What does increase possible suffering is the legal limbo, where the authorities have refused the possible treatment while they fight Charlie’s parents through the courts.”
– Myth 3 – His quality of life will not, and cannot, improve –
Response: “If the treatment works, and there is chance one in ten, then his quality of life will be improved significantly. Who is to judge that his potential improved quality of life would not be good enough to allow him to live! Such logic would open the floodgates to sentencing all the terminally ill, the disabled, the mentally disturbed, the sufferers of diseases without cure (such as diabetes, and many cancers) to death, and legal withholding of treatment.
“This is not, and cannot, be the norm. Quality of life is relative. Ultimately, we cannot all have the same quality of life, but we cannot also judge that a life less enjoyable than what we deem acceptable, should simply be terminated.”
– Myth 4 – Charlie is severely/catastrophically/irreparably/irreversibly brain damaged –
Response: “This has not been proven nor is it the conclusion of the MRI or EEGs that have been prepared for Charlie. Furthermore, there is no proof that he is suffering from such alleged severe brain damage. Charlie is not brain dead. The doctors willing to treat him would not have accepted to treat him if he were brain dead. They were clear on that.
“If the proposed treatment works as expected the result will be to will assist the repair of damaged cells. Charlie will not be a vegetable, he will be able to move, to respond and to interact.
“Brain damage is not a legitimate reason for seeking the termination of life, doctors fight to save patients with brain damage on a daily basis. Charlie’s is not severe, nor irreversible, and since there is a significant chance that it can be improved, means we cannot legally or morally deny him that opportunity.”
– Myth 5 – Charlie is blind and he cannot open his eyes –
Response: “Charlie opens his eyes on a daily basis. He had his eyes open the whole time his parents were permitted to take him to the roof of GOSH for a picnic, in June.”
– Myth 6 – Charlie, and his parents, are blocking a badly needed hospital bed –
Response: “The NICU where Charlie is currently lying, has, at least, 2-3 available beds on a daily basis. Children are not being refused access because he is there. Charlie’s parents DO NOT WANT TO KEEP HIM THERE, they have offered to privately pay for him to receive treatment, but the hospital refuses to cooperate with a release. It is the hospital which is preventing the freeing up of his bed, unnecessarily to the ultimate detriment of their patients.
– Myth 7 – Charlie’s parents won’t be able to care, or cope –
Response: “Charlie’s mum is a qualified, experienced carer, and she is best placed to care for her son. His parents are devoted, and have given up their lives to fight for Charlie, they are fully able to cope, and have done so admirably for the past 8 months.”
– Myth 8- The treatment is experimental –
Response: “The treatment is, in fact, supported by 5 researchers, and 2 treating doctors (clinicians). There is a growing body of medical support.
“There is also ethical support, as set out in the published Lancet article, written by Prof Julian Suvalescu of Oxford University.”
Chief Executive of Americans United for Life, Catherine Glenn-Foster, who is close to the Gard family, said on Sunday: “[Chris and Connie] are stressed as… their own parental rights are being stripped away by an institution that was hired to care for their son and instituted to care for the most vulnerable among us.
“That very institution hired to care for Charlie is trying to strip him of his rights and his parents of their rights to even just take him to get a second opinion.”