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.[...]
free country?
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