Medical child abuse panic- parents charged for following one doctor against the view of another

NY Times

 FEW things are tougher for a parent than dealing with a child’s serious medical condition, particularly if it is complicated and hard to diagnose. The parent has to make hard choices about treatment, navigating conflicting advice from doctors or even rejecting one doctor’s opinion and seeking another.

Recently, the situation of these parents has gotten even harder. Some doctors and hospitals have begun to level a radical new charge — “medical child abuse” — against parents who, they say, get unnecessary or excessive treatment for their kids. That this care is usually ordered by other doctors hasn’t protected parents from these loaded accusations.

Although most of these cases have nothing to do with real child abuse, credulous child welfare officials have too often supported the doctors, threatened parents with loss of custody, and even removed kids from their homes — simply because the parents disagreed with the doctor’s plan of care.

Perhaps the most notorious such case is that of Justina Pelletier, a teenager who was being treated for mitochondrial disease, or “mito,” a rare metabolic disorder that interferes with energy production. On the advice of a metabolic geneticist at Tufts Medical Center who was treating her, she was admitted in 2013 to Boston Children’s Hospital, so that she could see her longtime gastroenterologist, who had recently moved there. Without consulting the girl’s doctor at Tufts, Boston Children’s concluded that the girl’s problem was not mito, but largely psychiatric, according to The Boston Globe.

When her parents disagreed and sought to transfer her back to Tufts, Boston Children’s called child protection, asserting that the parents were harmfully interfering in her care. Although the Tufts geneticist supported the mito diagnosis, a juvenile court judge deferred to Boston Children’s assessment, and Justina’s parents lost custody. After more than 16 months in state custody, much of it spent in a locked psychiatric ward, Justina was finally returned to her parents — still in a wheelchair, still sick.[...]

As I’ve researched medical child abuse over the past year, several advocacy and support groups for patients with rare diseases told me they had seen an alarming rise in medical child abuse charges: MitoAction (which supports patients with mito); the American Partnership for Eosinophilic Disorders (disorders relating to white blood cells); the Ehlers-Danlos National Foundation (a rare disorder of the connective tissues); and Dysautonomia International (autonomic nervous system disorders). Through these groups, I’ve surveyed 95 parents who have been accused, in 30 states.

Dr. Frances D. Kendall, the geneticist in Atlanta who diagnosed my daughter’s mitochondrial disease, told me that she has seen a rising number of cases in which the parents of children with mito had been wrongly charged. Dr. Mark S. Korson, the geneticist who treated Justina Pelletier at Tufts, also said that such charges have snowballed in recent years.[...]

In its zealotry, the medical child abuse movement resembles two other panics from the recent past: the sex-abuse panic of the 1980s and 1990s and, more recently, the panic over shaken-baby syndrome. In both panics, experts saw foul play where none existed, government officials took their views at face value, and people were wrongly convicted and imprisoned, their lives ruined. Medical child abuse is causing similar harm.[...]

Government should not get involved when doctors disagree about a diagnosis or course of treatment, the doctors have full knowledge of the child’s medical record, and a parent chooses one doctor’s opinion over another’s. It should intervene only when there is evidence that a parent has intentionally provided significant misinformation to physicians, fabricated elements of the medical history or induced medical symptoms. Parents should always be allowed to seek second (and third) opinions.[...]