Justina Pelletier: The Debate Continues

On April 1, 2014, Slate published an online article titled Mitochondrial Disease or Medical Child Abuse?  The author is Brian Palmer.  Slate is a daily, general interest web magazine, founded in 1996, that provides “analysis and commentary about politics, news, business, technology and culture,” and is a subsidiary of the Washington Post.  Brian Palmer is Slate’s “chief explainer.”

As the title suggests, the article tries to explore the central question in Justina’s case:  does she have mitochondrial disease or is she a victim of medical child abuse?  The author does a good job of defining the various terms, unraveling the issues, and presenting both sides of the argument, though on balance he comes down in favor of Boston Children’s Hospital.  Here are some quotes:

“It’s easy to get angry about this scenario—and there are some troubling things about the way the conflict has been managed—but the doctors at Boston Children’s deserve a defense.”

“…the science is complicated. Mitochondrial disease (Justina Pelletier’s original diagnosis) and medical child abuse (the Boston Children’s diagnosis) can look extremely similar. Both can be deadly if not treated properly.”

“‘Mito,’ however, is incredibly difficult to diagnose definitively.”

“Just as Justina Pelletier exhibited some symptoms consistent with mitochondrial disease, her case also has some of the hallmarks of medical child abuse. One of her chief complaints was digestive trouble, the most common symptom among medically abused children. She had gone through extreme surgical procedures, including the placement of a permanent port in her belly to flush her digestive tract. Her parents had engaged in physician shopping, and experts at Boston Children’s felt that Justina’s emotional state improved when her mother left the room.”

“The doctors at Boston Children’s had few options if they really believed in their diagnosis. Just as the treatment for strep throat is antibiotics, the treatment for medical child abuse is separating a child from her parents. Sending Justina Pelletier home would have represented the height of irresponsibility if their diagnosis was correct. One in 10 children who suffers medical abuse eventually dies at the hands of his or her parent.”

Obviously all of these issues have been debated at great length, not only in the courtrooms, but also in the mainstream media and in the blogosphere.  It is likely that these debates will continue, and will be wide-ranging.

But in this post I would like to focus on just one issue.  If the “extreme surgical procedures” that Justina had undergone were an integral part of the alleged “medical child abuse,” why is the surgeon who performed these procedures not being censured or charged?  Are we to believe that this surgeon performed these extreme procedures without valid cause or justification?  Is it plausible that he/she performed these procedures more in response to parental pressure than genuine medical need?

If, as is claimed, Justina was the victim of “medical child abuse,” isn’t it reasonable to consider the surgeon one of the primary perpetrators?  And if not, why not?  In other forms of child abuse, aiders and abettors are routinely taken to task.  Why is medical child abuse different?

It has been widely reported that an abnormal “congenital band” of cartilage, 20 inches long, was removed from Justina’s abdomen in 2010.  This indeed would constitute an “extreme surgical procedure,” but the critical question is:  was it justified?  Is there a pathologist’s report that casts doubt on the need for the surgery?  If not, then what is the relevance of the assertion that she had gone through “extreme surgical procedures.”  It is possible that a surgeon might excise tissue needlessly either to boost his income or even from over-enthusiasm.  But there exists, in the form of the pathology lab, a time-tested safeguard against this sort of excess.

The validity of the concept of medical child abuse in this case hinges, at least to some extent, on a history of surgical procedures which, apparently, in the opinion of psychiatrists were unnecessary and potentially injurious.  But, on the other side of the scale, we have a surgeon excising real tissue and subjecting this tissue, and incidentally his/her own medical judgment, to critical objective scrutiny.  A surgeon who routinely excises benign tissue, or who performs other unnecessary surgeries, will quickly incur some challenges from the hospital’s Q.A. committee, the medical licensing authorities, and ultimately from malpractice trial lawyers.

By contrast, the psychiatrist’s opinion as to the necessity or appropriateness of the surgery is subjected to no objective check whatsoever.  And perhaps therein lies the answer to my earlier question.  If those psychiatrists who allege medical child abuse had to challenge the surgeons who aided and abetted the alleged abuse, it is likely that in  most cases, the surgeon’s judgment would prevail, and another nail would be put in psychiatry’s coffin.  It’s easier by far to lay the blame on the “persistent and deceptive” parents and to absolve the surgeons and other medical specialties by the blanket contention that they were duped.

  • Lisa

    You asked “Are we to believe that this surgeon performed these extreme procedures without valid cause or justification?” Clearly we and especially BCH should not believe this to be the case as they hired the GI doctor that supervised these treatments. With that being the case, BCH and DCF clearly need to release Justina to her family.

  • colleen10001

    Parents wanting a second opinion, and not being allowed (and worse) is how simple this is.

    Justina Pelletier had been successfully treated at TUFT’s Med. Center. and was thriving. After contracting flu, her parents brought her to BCH. There ER Dr.’s decided that TUFTS was wrong and Justina had Somatoform Disorder, which is psychological condition where pain is imaginary.
    …When #JustinaPelletier ‘s parents disagreed and wanted to bring daughter TUFT’s, Boston Children’s Hospital called in the Dep. of Families and Children to take custody and had her parents removed by an Armed Guard.
    (Just HIGHLIGHTS)
    FOR 12 months BCH and DCF had this little girl locked in a Pysch. WARD. BCH maintains that children who are wards of the state are subject to med. testing. for untold reasons her hair isfalling out, her gums receeding, her abdomen is bright red.

    #Freejustina

    Justina needs to be released HOME to her Caring concerned loving Family for
    medical, spiritual, health wellbeing. Natural place where she should be, needs to
    be and wants to be……. AT HOME WITH HER PARENTS, siblings,
    grandparents and extended family. MA fighting against a 15 old having
    these basic necessities is beyond wrong and unacceptable.

    We help Justina now and make enough noise so this doesn’t happen to other families in the future #FreeJustina #OpSafeChild

    To call this a debate only shows views of someone thinking as the system needs them to think.

  • Danielle

    I can answer some of these questions by saying first that I am a mother of 2 children w/ rare genetic disorder known from birth which causes us to have multiple doctor appointments not only for the doctors to run multiple probably unnecessary tests but also for symptoms going on constantly that needed to be addressed and when you have MULTIPLE systems going awry you are sent to MULTIPLE doctors that means MULTIPLE different opinions ALL the time and constantly hearing “we don’t know” because MITO is VERY hard to truly diagnose and has very WACKY symptoms that believe me has made some doctors say “its all in her head” about my daughter yet 4 people including doctors in another state all saw the symptoms happen right in their face and no one knew what that meant. My daughter also depends on me to peak for her even tho shes a teen she is dependent on me not because I raised her like that because im a VERY independent person but this disease comes w/ anxiety, learning challenges and its very overwhelming so maybe Justina did act different when her mom left the room because now she had to suck it up and advocate for herself in her moms absence and its so easy for parents to want to help their child as much as possible and im sure after dealing w/ this from another child the parents are on edge, I definitely am and im doing all of this juggling by myself, its constant full speed ahead at all times… So I say all this because NO ONE TRULY understands the ins and out of what parents go thru w/ kids like this when they haven’t gone thru it themselves so you can have all your book facts about what should take place and how to diagnose medical abuse etc… but REALITY that’s NOT real life, each case is different and YES there are parents who abuse kids and doctors who care but this situation w/ Justina is soooo obvious what is going on here and now if they give her back its like they are admitting fault and we cant have that now, can we? because funding might be cut and God forbid we jeopardize money!!!

  • Phil_Hickey

    Lisa,

    Yes. Their hiring of Dr. Flores (which is why the Pelletiers went to BCH in the first place!) is the great irony

  • Phil_Hickey

    Colleen,

    Thanks for coming in. I’m sorry that my use of the term “debate” has apparently
    offended you. I am certainly not someone whose thinking is in line with the psychiatric system, as even a cursory glance through my site will attest.

    Best wishes.

  • Phil_Hickey

    Danielle,

    Thanks for coming in. You’ve helped put a lot of these issues in perspective.