By Dave Andrusko
Understandably, the British press’ attention (at least on domestic affairs) is heavily weighted in favor of coverage of their elections. They will have a new Parliament and possibly a new Prime Minister.
But Jayne Backett was 200% correct when she wrote,” Charlie Gard: The General Election Isn’t The Only Important Decision On June 8.”
Her story, posted yesterday was composed prior to the decision handed down today by the UK Supreme Court in which the justices tragically decided they would not hold an emergency hearing without which little Charlie’s life-sustaining measures will be stopped.
Why? Ultimately because the three justices concluded parents can’t insist on treatment that’s “not in the child’s interests.”
As NRL News Today readers know, 10-month-old Charlie’s medical condition is grave. He suffers from a rare, genetically-caused disease, so rare there are only sixteen known cases in the world. Charlie’s parents sought to remove him from the hospital to try “nucleoside bypass” oral therapy in the U.S. But the hospital wouldn’t let Charlie leave, and the courts ruled against Connie Yates and Chris Gard, Charlie’s parents.
What insights does Ms. Backett, a lawyer in a prestigious law firm, bring to the case? Let’s begin with a common denominator for parents everywhere:
I suspect for US readers of this article, the concept of parents being blocked by the State from taking their son to access medical treatment for which they can afford independently is unimaginable, unthinkable, cruel and unjust. As a parent of two children myself, there is a deep rooted ethical sense that the UK establishment is failing Charlie Gard. In the UK it is not uncommon for experts in a case like Charlie’s to have their identities protected. Those anonymous experts will not have spent hours, day’s weeks and months at Charlie’s bedside monitoring his every moment as his parents have done. They won’t have witnessed what he is and isn’t capable of. In Charlie Gard’s case, the true experts are his parents.
The “true experts” are Charlie’s parents. That’s #1.
#2. Charlie’s situation “echoes” one from 2014 in which parents disagreed with the treatment offered for their then five year old son who had a brain tumor. The parents were arrested and put in prison after they fled with Aysha to Spain. The UK prosecutors thought better of it, withdrew the arrest warrant, and Aysha received the therapy preferred by his parents. He is now “leading a cancer-free life in Spain.”
Doctors/experts/hospitals aren’t always right. In fact current research suggests the method the parents chose “generates fewer side effects to the heart and lungs, carries less risk of secondary cancers, and reduces hearing loss and cognitive impairment factors.” Which leads us to the #3 insight from Backett.
#3. Everyone including the parents understands the experimental therapy is not a cure. Nobody expects “any miracles” but the parents
do not accept that he is beyond hope of improvement in some form, and there are documented cases of other children having received the treatment and having made improvement. Notably, Connie Yates is a carer for adults with learning difficulties and is more than qualified to understand what hurdles may lay ahead if her son has the chance of a life with disabilities.
Charlie’s life is not worthless or of less value than anyone else’s just because he will not live indefinitely. Fourth and finally
#4. The unmentioned, elephant in the room, is “quality of life.” Backett observes
If, at law, Charlie’s interests are of paramount concern, that does not mean that the standpoint of a reasonable and responsible parent who has their child’s best interest at heart ought not to be given weight. Chris Gard and Connie Yates appear to be exceptionally reasonable and responsible people who just want to give their little boy a chance of a life with the possibility of an improved existence to his current state.
Yates and Gard simply want to give their son a fighting chance for a better prognosis, knowing there are no “promises” the therapy will work in Charlie’s case. But as Richard Gordon, their lead attorney observed, “What is really at stake in this case is the state, on a massive scale, intruding in your right to private and family life.”
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