This seems so disturbing. How do you fault the parents for following the advice of what the first doctor said?
Oddly enough, I just learned about this story earlier today, and it sounds so insane! This poor family!
Justina was diagnosed with mitochondrial disorder at Tufts medical center, not some fly-by-night or alternative medical place! Her sister had already been dxed and treated for the same disorder.
There was no mention of a guardian ad litem for the child… this seems like such an overrreach by the state against this family.
Another point I saw mentioned was that Justina had not had any access to education while held in the psych unit–which means sye has effectively lost two years of schooling.
Justina Pelletier’s situation is not unique, but hers is among the worst extreme.
Facebook page: A Miracle for Justina
Facebook group: Free Justina Pelletier From Boston Children’s Hospital!
I get that we are all eager to complain about DCF and prefer to take the side of parents (I do, too) but honestly until all the facts are out, how are we supposed to judge it? All the talk is from one side. Surely if it was as simple as a disagreement in diagnosis then it would not have come to this, let’s see what happens.
How did you come to the knowledge that her sister has the same disorder?
I’m reading that an RN who used to work there is accusing the doctors of a pattern of control (I’m paraphrasing) foxct.com/2013/12/19/custody-of-west-hartford-girl-stuck-in-hospital-to-be-decided-friday/ and that other parents in similar circumstances have experienced the same accusations of “medical child abuse”.
It’s one thing for a parent to refuse medical care and quite another for them to accept one doctor’s diagnosis over another (which seems to have happened here). Hopefully this mess can be sorted out and the child can go home to her family.
Could the judge in this case not simply have ordered a second opinion from doctors unrelated to the case, BEFORE taking custody from the parents. It is not unheard of for doctors to disagree - so why should it be a legal matter which licensed practitioner the parents choose to believe?
I agree. Something about this case reminds me of Terri Schiavo with the DCF taking her husband’s role in all of this.
In this article, they mention that her 25-year-old sister also has the condition.
Three years ago Justina was diagnosed with the rare genetic muscle wasting condition Mitochondrial Disease. Her 25-year-old sister Jessica also suffers from it.Both girls were treated by specialist Dr Mark Korson, at Tufts Medical Center in Boston, a two-and-a-half-hour drive from their home in West Hartford, Connecticut.
And they also seem to live in a different state. Weirder and weirder…
Thanks. Proper attribution of a fact is important. Remember the story of the kingdom that was lost because of one nail. We need each nail.
Justina’s medical condition is actually quite easy to understand.
People at Boston Children’s Hospital wanted to focus on “somatoform” as her diagnosis. However, Justina was ***born ***with a condition called congenital band (for which, she had surgery). While imprisoned in Boston Children’s Hospital, she still required surgical intervention for bowel movements, which automatically cancels this “somatoform” diagnosis. She has also had a stroke (though I don’t know how old she was, or where she was, when it happened).
Her *mind *did not create congenital band. She was born with a suffering condition.
I was surprised that wasn’t mentioned in more articles, so I apologize for posting without a link.
More and more interesting. Could a somatoform disorder have developed after/alongside of her initial physical problems? It just blows my mind what untreated disorder (if we accept that she has one which her parents refused to treat) could cause worse suffering than being incarcerated in a hospital. Is inpatient care the usual treatment for this mind disorder?
Like I said in a previous comment, Justina’s situation is not uncommon. Boston Children’s Hospital (and other hospitals) have a history of using state social service agencies to take rights away from parents, and take custody of minors. A lot of that information can be found in the two Facebook links I provided.
Public knowledge about Justina’s situation is, specifically, the discrepancy of diagnosis (Dr. Korson / Tufts says it is mitochondrial disease, Boston Children’s Hospital says it’s somatoform). The diagnosis of somatoform is based on an evaluation by a psychologist named Simona (I can’t remember her last name). I honestly don’t know where things stand today, since I stopped following the “case” about a month or so ago, after Justina was said to be moved from Boston Children’s Hospital to another place.
You may be interested in:
p.s. It has been suggested that it is possible that “doctors” are actually using some patients to practice their study, and “treatment”, of this “new” condition called “somatoform”. shrug, all I know is, congenital means: born with it.
Interesting article here:
This article seems to imply that the parents were “difficult” and that it led to some bias an the part of BCF.
Oh, really!!! How about difficult doctors who assume everything they don’t understand is psychological??? I had a physical problem which caused a freat deal of pain for several years before it was dxed and the doctors I saw basically dismissed it as all in my head.
Some kid seven months out of med school, still in his residency, gets to start off a chain of events which lead to a child’s incarceration for 11 months in a psych ward?!?!?!? Overruling the diagnosis of a specialist with *decades *of experience?!?!?!
Oh, my, maybe doctors–not all, but far too many–should get their noses out of the air and realize their patients’ parents might just happen to love and care for their children and when they are told their daughter will be talen off her *prescribed *meds the parents may just feel somewhat agitated!!!
Don’t get me wrong, I think the treatment of this girl and family is a tragedy. But my reading of the article I linked was critical of BCH and supportive of the family. Even if parent are “difficult” (as the article implies), it should not impact a doctor’s judgement.
Ahhh, maybe I didn’t get the full flavor of the article because one has to sign up to read the whole thing. He himself didn’t seem overly on the side of the doctors, but, idk, not unsympathetic to the doctors in a situation in which the daughter of this couple, who were not ignoring her medical needs, was taken for close to a year and even now is not being returned home!
God bless Glenn Beck for exposing this outrageous scandal, as well as anyone else who has helped.
Watching it again on The Kelly File on Fox news I think the following should happen:
- The Judge who issued the illegal gag order should be disbarred and sent to Gitmo.
- The Hospital staff who accused the parents of neglect for following exactly what the Doctor’s of the other hospital said, should be stripped of their medical credentials and never be allowed to work in a hospital.
- DCF that failed to properly investigate the lack of dangerousness of these parents should be fired and put on dangerous offender list and not allowed to be near any children because of this.
I know it’ll never happen, but it should.
Family of Justina Pelletier devastated after Mass. judge's ruling