|Prison bars graphic via www.officialpsds.com
BCH graphic: childrenshospital.org (altered, of course)
There is nothing that infuriates me more, as a person with a rare disease, myself, than to read about conditions such as "somatoform disorder" and "conversion disorder". To me, these are the "diagnoses" used by physicians who just can't figure out what is truly wrong with the patient. In my book, you are a bad doctor if you find yourself diagnosing difficult cases with these types of psychological illnesses. Plus, if you are a hospital that then engages child
This family's plight upsets me greatly, because, thinking back, this very thing could have happened to our family. When I was younger, I was passed around several doctors who just couldn't diagnose me and said I was having paralytic attacks "for attention". I have since been "vindicated" by a genetic test that identified my condition, but not everyone has the luxury of an illness that shows up on a genetic test. Luckily, I spent 10 years under the care of a good doctor who was able to diagnose me clinically, well before my genetic diagnosis was made possible.
Accusing parents of "medical child abuse" is disgusting and an insult to parents just trying to get their children some much-needed medical help. I spent 18 years undiagnosed and untreated, experiencing full-body paralysis, due to the failures of the doctors I encountered. My parents dutifully took their word when they said I would "outgrow" it and hoped for the best, but what if they had pushed back and demanded answers? Would they have been accused of "medical child abuse"? I shudder to think...
What I do consider abuse is taking a child away from their loving, dedicated parents. That is psychologically harmful. It is not in the best interests of the child. It seems completely self-serving for the hospital do lay the blame on the parents for their disagreement about Justina's diagnosis. If opinions differ between hospitals, then they should know that the medical situation has no easy answers. Instead, they take the "easy" way out and label the parents abusers and kidnap the child so they can do as they see fit.
For those of us in the "atopic" community, with children dealing with various conditions that are not always easy to diagnose (think Eosinophilic Esophagitis (EoE), combinations of allergies and intolerances, etc.,) this is something we need to keep on our radar. I will be looking into any ways that I can help this family, and all other families dealing with these agencies that seek to overstep their boundaries.
We cannot sit by and allow this to happen.
P.S. I know that she wasn't, technically "kidnapped" since that is illegal, but the fact that they are able to get away with this, within the confines of the law is startling and disturbing. What is legal is not always right. I know Boston Children's Hospital is not the only hospital to have ever done this, but it is the one currently in the spotlight.