I'm reading The Book of Woe Gary Greenberg's very much "inside baseball" account of the infighting and the egos involved in the construction of the DSM. The book is a bit overwritten, and a bit too much about personalities and conflict between individual people rather than about the big ideas underlying the struggle--or maybe thats just where I am in the book and this is corrected for later. But reading the book has really made me understand what is going on in the recent horrifying cases of "medical child abuse" at Children's Hospital--its a battle between specalities and specialists for control over the definition of a complex, badly understood, illness or syndrome. And the psychiatrists are winning even though they have literally nothing to show for their belief that their diagnosis is superior to the medical doctors whose theories they are usurping. I'll put a link up to the Kosdiary which interested me in this subject and if you follow it down the rabbit hole it will take you to a series of Boston Globe Articles which are, unfortunately, behind a paywall. But the gist of it is this: in the US your child can be suffering from a complicated disorder, with really serious, measurable, knock on effects for her health. You can follow the medical regime that your doctors order, paid for by your insurance company, but if you walk through the door of Children's Hospital to see a specialist and the Hospital Psychiatric Staff decide that you are the problem you can lose all control of your life, and your child's life and there is basically no recourse. Your child can be taken from you and forced to live on a hospital ward for months, and then put into a locked psychiatric ward, against your wishes and hers. And all based on an unproven hunch by a psychiatrist that you and your child are colluding in creating the "somatization" of a psychological problem which is, apparently, producing the real medical conditions for which you were admitted.
One of the fascinating things, to me, about this struggle is that the villain of the piece according to the doctors is the mother, always the mother. In true DSM style they have manufactured a seemingly reliable "checklist" of categories for the Hospital Staff to cite which include "mother is too educated" or "uses the internet." Of course every single parent who has had anything to do with the medical treatment of their child is urged to "be their child's advocate" and "learn enough to follow along" on the medical recommendations. And anyone who has ever been involved with the care of an adult loved one in the hospital knows that you are always held at fault by the staff if, because you weren't there "advocating" your patient was neglected.
I've been in hospitals for the care of my elderly in laws, my own great aunt, my grandparents, a neighbor, and my husband. Being pro-active and aware of the medical and social issues surrounding the care you are getting isn't some kind of weird thing that bitchy, crazy, parents do to gain attention or because they are in a folie a famille but a natural outgrowth of the complexity and incoherence of the hospital situation. Sometimes you are the only person on the floor who is paying the slightest attention to your child or your relative. Sometimes you are the only person other than the primary care physician who is thinking about the whole patient, the whole case--most of the nursing staff and the innumerable people who come in and out to take the vitals are offering at most fragmented attention and have zero interest in, or knowledge of, the entirety of the patient's history.
Ultimatley this is a struggle for control over the body of a living child, a living child with horrendous health symptoms and no clear diagnosis or obvious treatment plan and no good prognosis. Its terrifying to me that the role of her own family in supporting her emotionally, in just being her family and loving her, is so disregarded and so meaningless to the hospital staff that her parents can be declared the problem and the child taken away from them as though she were a car that was just being taken to a new garage. I took my child to Children's Hospital with Pneumonia and when she was very young--3 or 4--I slept in the chair next to her bed for three days. Family are more than technical, legal, guardians of small humans. We can't be replaced by medical fiat. I can't imagine the arrogance and the cruelty of hospital staff who think that it would be healthy for any young child to be isolated from her family for months on end with no replacement other than a shifting set of hospital nurses and cleaning staff.
The CT Girl was under the care of a set of Doctors at Tufts--if she was "misdiagnosed" with "Mito" (the nickname for a possibly made up disease known as Mitochondrial disorder) surely it is down to those doctors, it is the fault of those doctors, and the solution lies in a sit down and agreement among all the doctors whose various diagnoses conflict. But the Children's Hospital doctors who explicitly reject the expertise of the Tufts Doctors refuse to engage in a direct, peer to peer, conflict which they might lose and instead turn their guns on the parents. The (male) doctors at Tufts are thought to be, somehow, under the thumb of the female parent--she forced them to make the diagnosis? She blinded them with maternity? I'm not at all surprised that a conflict between professional equals gets smoothed over by accusing a woman of being the cause of everything, but I am surprised that this kind of sleight of hand is uncritically accepted as perfectly normal and legal by the legal professionals involved.