Saturday, June 28, 2014

Parentectomy - when is it necessary?

That's the first time I've typed the word parentectomy - a bona fide medical term, mind you, which has been around for decades without ever crossing my path.

It relates to two stories that found my inbox via the hubby within one week. Each conveyed the flip sides of government intervention in parenting, specifically, in parents' medical choices for their children  The first illustrated how dangerously lax welfare and hospital authorities can be. The second, how dangerously dogmatic they can be. It's an issue that resonates for parents of children with severe disabilities..

We tend to lock horns with those authorities more than your average parent; we need more medical intervention than most; our children's conditions are more complex than most; and we tend to be attuned to our children's conditions more than most. So it stands to reason that we have a lot to say to doctors about medical decisions.

Sometimes fear of those authorities stifles us. I still remember how passive the hubby and I were  in the face of the incompetent and arrogant doctor treating C. back in 1996. My shins are sore from kicking myself with regret. If we had become pro-active as soon as we realized that the guy was stumped by C.'s status epilepticus,  I'm certain she would be in better shape today.

There's no shortage of regrets in C.'s story, so back to those two news items.

The first involves a single-mother, Lacey Spears, whose son Garnett had, from birth, myriad medical ailments which were diagnosed as that catch-all: "failure to thrive". He was hospitalized 23 times within the first year of his life. But most of his symptoms didn't manifest while in hospital and were merely related to the staff by his mother. When she requested a gastrostomy for him, the first couple of hospitals she approached refused to oblige. She finally tracked down a compliant surgeon. Garnett was tube-fed his entire life.

Lacey Spears with Garnett, her son
By now, you surely sense where this is heading and indeed, reports labelled Lacey's affliction as   Munchausen's by Proxy.

But to make a long story a bit shorter, that wasn't her only crime. Lacey finally killed her child by injecting him through that feeding tube with lethal amounts of salt. She was arrested five months after his death. If authorities had heeded the red flags raised from the start of her Munchausen journey, this boy would be alive and healthy today. [More background at Huffington Post and the New York Times]

Now for the flip side of this issue: the case of Justina Pelletier.

Boston Children's Hospital accused Justina's parents of "medical child abuse",  the latest incarnation of Munchausen's by Proxy. For those who, like me, hadn't heard of this newfangled crime, some background via the Boston Globe:
Pediatrician Carole Jenny and her psychiatrist husband coined the term “medical child abuse” some time ago, but it has taken hold in the medical world just in the last few years. It has become a controversial catch-all for a wide spectrum of cases in which health care providers deem parents acting against the best interests of their child in a medical setting.
Many such parents used to be diagnosed with Munchausen by Proxy, a psychiatric condition in which they seek attention from the medical community by exaggerating, fabricating or even inducing a child’s illness. The new term avoids references to parental motivation. Justina's parents brought her to Boston Children's when she suffered global deterioration in her functioning.(extreme fatigue, slurred speech, difficulty walking, etc.)  She was being treated for mitochondrial disease at Tuft's Medical Center but her doctor there recommended that she be examined by a colleague at Boston's. Shortly after her admission, the team at Boston's (excluding that colleague) determined the cause of her symptoms to be entirely psychiatric, namely "somatoform disorder". They insisted her mitochondrial medications cease immediately to be replaced by psychiatric treatment. It wasn't long before the protesting parents had lost custody of their daughter, the youngest of their four children. After a 16 month, involved battle Justina returned home last week.
You can read more baffling details here.

Justina with mother
The part that alarmed me most was the description of the sort of parent that doctors likes to demonize. I cringed from, well, self-recognition: 
Dr. Eli Newberger, a pediatrician who founded the child protection team at [Boston] Children’s in 1970 and ran it for three decades, cautions that “doctors in this new specialty [medical child abuse] have enormous and really unchecked power.”
As an expert witness in cases around the country, Newberger said he’s seen a tendency for state child-welfare agencies to be “overly credulous to hospitals” and for some child protection teams to show a “reflexive willingness to label and to punish,” especially educated mothers who are perceived as being too pushy.
Assertive parents, armed with information from Internet support groups and believing they’re advocating for their child’s best interests, risk alienating doctors and nurses, leaving them few allies if they find themselves accused of medical child abuse. [Boston Globe]
This was a complex case but, as you'll see in the exhaustive Boston Globe analysis, not as rare as you'd expect. So where does that leave us? More than a bit edgy I'd say.

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