Simcha Fisher, With All Due Respect: You Have No Idea What You're Talking About When It Comes to Charlie Gard

Saturday, July 15, 2017

Simcha Fisher, With All Due Respect: You Have No Idea What You're  Talking About When It Comes to Charlie Gard

Last week Simcha Fisher shared her thoughts on the Charlie Gard situation. She wrote about Catholic teachings on end-of-life care, and Charlie's parent's decision to pursue treatment. I can't go into the whole Catholic ethics aspect (I'm not Catholic), but I have had a child with a rare and lethal birth defect, who was denied care based on quality of life judgements, so I'm a bit of an expert on the other portion of her post.

To begin with, I'll be blunt: I was a bit surprised when I looked over her blog and noted no evidence of her ever having to deal with the experience of having a child with profound anomalies. In addition, I note no evidence of her losing a child- yet she posits herself as informed on the state of parents in crisis situations who choose experimental treatments for their (potentially) lethally-ill children. She links to a peer reviewed study from the National Institute of Health, which talks about a phenomenon called, "Therapeutic Misconception" as evidence of how disillusioned Charlie Gard's parents are. I'm kind of puzzled as to how this particular phenomenon applies to a situation like Charlie Gard's, being the study is clearly speaking of those who enroll in clinical trials, expecting them to be curative. 

Chris Gard and Connie Yates aren't trying to enroll their son in a clinical trial. They are attempting to use an experimental treatment for their gravely ill son- and this is actually quite normal when it comes to rare diseases.

If Ms. Fisher had ever experienced having a child with a rare, potentially lethal illness or disability..... she would probably have known this.

She would also have known that, unlike clinical trials, before beginning an experimental treatment there are massive legal hurdles to be overcome - unlike a clinical trial, experimental treatments are often done on an individual basis, requiring FDA approval and a months long review for the particular child involved. I.e. each child get's his/her own review. When it comes to an experimental treatment, we've already put measures into place to assure that children like Charlie aren't taken advantage of.

In addition, her comments on what she "imagines" Charlie Gard's parents are feeling show a deep ignorance regarding the process by which a parent decides to choose extreme measures. By slyly attempting to discredit their motives with implications they are just too exhausted and overwhelmed to be putting their child's best interests first, Ms. Fisher discredits the motives of every single parent who insists on treatment for their genetically atypical child. That she does so to ride the trend of a wave of social media traffic is despicable. She could very well have written about Charlie Gard and the Church's teachings regarding end-of-life care without dragging their names through the mud-- adding on to the already enormous amount of censure they've received from social media and international press. 

"Whether Charlie Gard’s parents are suffering from the therapeutic misconception, I do not know; but I can well imagine that it’s almost impossible to think clearly about what is in the best interest of their child."- Simcha Fisher

Her implication is very clear: she "doesn't know" whether Connie Yates and Chris Gard are "suffering"..... but it's obvious she believes they are insensible -- and selfishly insensitive --  to their child's pain. 

Although I've seen her name tossed around, I don't really know who Simcha Fisher is. We have a few friends in common, due to us both being involved in pro-life advocacy, but I don't know if she has lost a child, or has delivered a baby with severe birth defect. What I do know about her is, in her attempts to be relevant, she's become just another voice shouting out about suffering (of which there is absolutely no evidence: read those court documents you copied from again, Simcha) and eugenics without being capable of comprehending the nuances involved in this type of uncharted medical territory.

Those who have been forced to make the types of decisions Chris Gard and Connie Yates are making would do well to swiftly, coherently, and (most importantly) cohesively combat the narrative that they're attempting treatment for their own gain, or because they can't possibly understand the complexities of treatments. They must immediately refute the claims that they're allowing children to be used as guinea pigs, against their own best interests. They must reinforce the reality of how well-educated parent advocates are, when it comes to children with disabilities.

Children's lives depend on it.

Simcha Fisher claims to representing the Christian faith, but her condescending tone, rush to join the secular crowd, and lack of compassion is troubling (at least), and could potentially be dangerous for children with disabilities. Painting parents, who are often their children's only advocates, as too ignorant and emotional to make proper medical decisions for their fragile children is a disastrous course to take. I can only hope that in the future, Ms. Fisher remains focused on the subjects she does know about, and leaves the care and concern of children to those best suited to making sure they receive the best care possible: parents and life-affirming physicians who work towards a mutual goal of figuring out what's best for each child, together as a team. 

I've written about Charlie Gard HERE
and HERE as well.

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