Wednesday, February 26, 2014

Justina Pelletier - Kidnapped by Boston Children's Hospital

A friend shared this on-going battle that two parents are engaged in, with Boston Children's Hospital and the Department of Children and Families, over the care and custody of their teenage daughter, Justina.
Prison bars graphic via
BCH graphic: (altered, of course)
To summarize the situation, Lou and Linda Pelletier, of Hartford, CT, took their daughter, Justina, to Boston Children's Hospital for treatment, over a year ago.  Their daughter has Mitochondrial Disease, which can be difficult to diagnose, if you don't know how.  While being treated, previously, at Tufts Medical Center, they were working under that diagnosis, but once she reached Boston Children's, they decided that the young girl had "somatoform disorder" which is used to describe patients with real symptoms, but no true underlying cause. (Read: "It's all in their heads.")

There is nothing that infuriates me more, as a person with a rare disease, myself, than to read about conditions such as "somatoform disorder" and "conversion disorder".  To me, these are the "diagnoses" used by physicians who just can't figure out what is truly wrong with the patient.  In my book, you are a bad doctor if you find yourself diagnosing difficult cases with these types of psychological illnesses.  Plus, if you are a hospital that then engages child kidnapping protective services, based on your inability to diagnose, then you cross over into negligent and, for lack of a better word, cruel territory.

This family's plight upsets me greatly, because, thinking back, this very thing could have happened to our family.  When I was younger, I was passed around several doctors who just couldn't diagnose me and said I was having paralytic attacks "for attention".  I have since been "vindicated" by a genetic test that identified my condition, but not everyone has the luxury of an illness that shows up on a genetic test.  Luckily, I spent 10 years under the care of a good doctor who was able to diagnose me clinically, well before my genetic diagnosis was made possible.

Accusing parents of "medical child abuse" is disgusting and an insult to parents just trying to get their children some much-needed medical help.  I spent 18 years undiagnosed and untreated, experiencing full-body paralysis, due to the failures of the doctors I encountered.  My parents dutifully took their word when they said I would "outgrow" it and hoped for the best, but what if they had pushed back and demanded answers?  Would they have been accused of "medical child abuse"?  I shudder to think...

What I do consider abuse is taking a child away from their loving, dedicated parents.  That is psychologically harmful.  It is not in the best interests of the child.  It seems completely self-serving for the hospital do lay the blame on the parents for their disagreement about Justina's diagnosis.  If opinions differ between hospitals, then they should know that the medical situation has no easy answers.  Instead, they take the "easy" way out and label the parents abusers and kidnap the child so they can do as they see fit.

For those of us in the "atopic" community, with children dealing with various conditions that are not always easy to diagnose (think Eosinophilic Esophagitis (EoE), combinations of allergies and intolerances, etc.,) this is something we need to keep on our radar.  I will be looking into any ways that I can help this family, and all other families dealing with these agencies that seek to overstep their boundaries.

We cannot sit by and allow this to happen.

P.S.  I know that she wasn't, technically "kidnapped" since that is illegal, but the fact that they are able to get away with this, within the confines of the law is startling and disturbing.  What is legal is not always right.  I know Boston Children's Hospital is not the only hospital to have ever done this, but it is the one currently in the spotlight.


  1. Thank you for sharing this. It is heartbreaking. I am so glad that her father broke the gag order and is speaking out. This needs to stop! There are way too many cases of it. Have you seen the trailer for the Un - diagnosed movie that is being worked on?

  2. Selena, good job in bringing this topic up. Even my own mother was told her symptoms were in her head for years and given anti-depressants for peri-menopause!

    It's painful when I hear of this kind of abuse. I've seen it as well with a personal friend when her child's prinicipal demanded her child be placed on drugs for ADHD--that he was NOT diagnosed with--instead he had a sensory disorder and was properly accommodated and is now recognized as genius.

    Thanks for starting this conversation.

    1. Thank you for sharing, Caroline. It's sad and discouraging how often this kind of thing happens. You would think as science/medicine advances that diagnostic abilities would improve, but instead, we are seeing more and more conditions that are hard to pinpoint. Rather than admit that perplexing trend and look for outside diagnostic help, some physicians just label patients with mental illnesses, which adds insult to injury.

  3. This is terrifying. There was a horrible case in Florida where the child actually died. I also know a food allergy mom (who I know wishes to stay completely anonymous) who got a visit from DCF. She believes a substitute school nurse reported her for "overmedicating" with an Epi-Pen. (Long story I'll tell you sometime in person.) My worst fear is that if my child were taken, he would be dead within hours, because it is so hard to feed him safely. Something I've had in the back of my mind is that if I have enough room someday, I'll sign up to be a foster parent specifically for children with food allergies/restricted diets. That has to be a need that we as a community could somehow address.

    1. Yes, that is (one of) my worst nightmares! I worry about my daughter getting kidnapped by a stranger, but I never thought I'd have to worry about a hospital or organization trying to take my child! I agree that this is something that we need to put some thought into...

  4. I have followed this case closely. You've given a really biased view here, but it isn't unusual since many people are outraged about this case because they are only hearing the father's side - the hospitals (I include Tufts here) cannot discuss it. The court documents around custody decisions were released a few weeks ago, and a lot of facts came to light, including that CT DCF was also concerned about child abuse from the parents. Most of the year Justina spent at Children's Hospital was because no facility in CT would agree to take Justina because of her parent's behavior, leaving her stuck in MA. This case is ugly and horrible, but certainly not indicative of a new trend toward hospital kidnappings. We should WANT our healthcare providers to look out for and act on behalf of potential victims of child abuse! I think you should look into the legitimate news articles about this case.

  5. I'm sure I am biased, given that I was treated as someone with "somatoform" disorder, even though they didn't call it that, back then, and thankfully did not to slap that diagnosis on me. "Luckily" for my parents, they just trusted what the doctors told them (which was flat out WRONG) and were not made out to be "difficult" for questioning things further. Mitochondrial disease, like my condition (Hyperkalemic Periodic Paralysis) can be hard to diagnose and to "catch" it in the act, on lab tests, but it does not make it any less real. I am now "properly" diagnosed to anyone's satifaction, since science has advanced enough, but that does not mean that I was any less affected the day before my test results came back. I thank my lucky stars that I found a doctor, many years back, who was able to diagnose me "clinically", without the need for proof via genetic testing (which is not available for every condition, I might add). The doctors or "professionals" who question Mito's existence disgust me, as I personally know a child who suffers from it and it is not a figment of anyone's imagination.

    Frankly, I do not care how the parents "behaved", as I would have a hard time not losing my patience, if a hospital was trying to take my child away, due to their own inability to diagnose or accept a previous diagnosis. I see this as a case of *certain* hospital staff, psychologists, and judges acting at their worst and most arrogant. It's not like these people were beating the daylights out of their child. I've known of far too many people who have done that and kept their children until they turned 18. Oh, but, no...these parents are "too concerned" about their child. (What does that even mean?? Do they want parents to not give a hoot?)

    Do I want them to look out for abuse? Certainly. Do I want them to misconstrue frustration and insistence on proper care with "medical abuse"? No. I'm sure I sound angry and biased, but that doesn't negate the fact that there is something rotten in the state of CT. As for whether this constitute a trend, well, time will tell. I would not say it is entirely a recent trend, given the behavior of *certain* doctors, ever since they have existed.

    (I keep writing *certain* doctors, because I do not have anger toward all doctors...I am eternally grateful to a select few and know of many other who honor their profession with their dignity and ability.)