Mass. granted permanent custody of Justina Pelletier

[alp227]

Source: Boston Globe

A long-running child custody case took a dramatic turn Tuesday, when a Massachusetts juvenile court judge awarded permanent custody of teenager Justina Pelletier to the state Department of Children and Families.

The ruling by Judge Joseph Johnston means the 15-year-old will probably stay in state custody until her 18th birthday unless her parents can prove they are fit to care for their child.

The judge’s four-page decision, which was provided to the Globe, was remarkable for its detail and forcefulness. Johnston faulted Connecticut’s child protection agency for its failure to get involved in a case involving a child from its state, and faulted Pelletier’s parents for their verbally abusive manner and haphazard decision-making that he says has sabotaged plans to move their daughter closer to home.

Johnston wrote that the parents called Boston Children’s Hospital personnel Nazis “and claimed the hospital was punishing and killing Justina. Efforts by hospital clinicians to work with the parents were futile and never went anywhere.”

Read more: http://www.bostonglobe.com/lifestyle/health-wellness/2014/03/25/permanent-custody-justina-pelletier-awarded-state-massachusetts/puyPhesGkKE6rGLid2VM2L/story.html

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Right Wing Watch has info about how Glenn Beck has hyped the Pelletier case.

[pnwmom]

1. The Christian supporters in this case could very well be right. This is a case, fundamentally,

about a disagreement between specialists at Tufts -- who say she has the same mitochondrial disorder as her older sister -- and specialists at Boston Children's hospital, who think her disease is entirely somatic.

The state should not be intervening to choose which group of Boston doctors is correct. And obviously the girl has deteriorated tremendously in the hands of the Harvard psychiatrists, who have withdrawn the medical treatment for it prescribed by the Tufts physicians. A year ago she was ice-skating. Now she's in a wheelchair. No wonder her parents are beside themselves with worry.

http://www.bostonglobe.com/lifestyle/health-wellness/2014/03/25/permanent-custody-justina-pelletier-awarded-state-massachusetts/puyPhesGkKE6rGLid2VM2L/story.html

The Department of Children and Families took emergency custody of the teen on Valentine’s Day 2013 after a diagnostic dispute arose between some doctors at Tufts Medical Center and Boston Children’s Hospital over the causes of her medical problems, including difficulty eating and walking.

Tufts doctors had been treating Pelletier for mitochondrial disease, a group of rare genetic disorders affecting cellular energy production, but physicians at Children’s concluded that her symptoms were largely psychiatric in origin. Her parents rejected the new diagnosis, and when they tried to move the girl back to Tufts, the Children’s team notified the state that it suspected the parents of medical child abuse.

[msanthrope]

3. I do not know enough about this case to decide which 'side is right..but it seems that a genuine

disagreement of fact is present.

[pnwmom]

4. There is. And both groups of doctors and both hospitals are highly respected.

So it seems to me that her parents should have been able to choose which doctors should direct their daughter's treatment.

The problem occurred because their old G.I. doctor from Tufts had moved to Boston Children's. So when she had a vomiting attack (part of the disease), they took her to the ER at Boston Children's. A psychiatrist saw her there, decided the Tufts doctors were wrong, and put her in a locked psychiatric ward for a year, and from there she was put into foster care. Both the Tufts doctors and her former GI doctor at Boston have been excluded from her care, because the psychiatrists decided her disease wasn't real.

[TheCowsCameHome]

2. Much has been written about this case.

Among other things, the girl's mother comes across in a bad way.

It's so screwed up, I still can't figure out what's what.

[pnwmom]

5. Wouldn't many good parents be at risk of coming "across in a bad way"

if they took their sick daughter to the emergency room at a new hospital, and she ended up in a locked psychiatric ward for a year?

If they were taking her to top doctors at Tufts, who had diagnosed her with the same mitochondrial disease as her older sister -- and were successfully treating her for it -- and the Harvard psychiatrists at Boston decided they knew better, and it was all in the girl's head? And they had to watch as their daughter went from ice-skating a year ago to being in a wheel chair -- after a year with no treatment for her physical disorder?

[TheCowsCameHome]

6. One of the earliest articles I read, in the Globe

- before any custody stuff entered the picture - had her demanding this, that, and the other thing of top medical people, as if she knew all the answers.

It certainly is an ugly, screwed up situation, I'm not sure who the villain is here.

[pnwmom]

7. The "custody stuff" happened almost from the instant she was in the hospital,

when the hospital prevented her from being seen by her doctors at Tufts or even by her GI who had moved from Tufts to Boston Children's.

I would have been furious, too, if I took my child to an ER for treatment related to a violent case of the flu; and she ended up in a locked psychiatric ward, denied access to her own doctors.

[magical thyme]

13. when you have a family member with a rare disease

you develop a detailed familiarity with it after years of dealing with it. Justina's older sister also has mitochondrial disease, so the parents have several years of experience dealing with it.

The parents brought Justina to the hospital specifically to see her gastroenterologist, who had moved from Tufts to Children's. They had her transported by ambulance because they were traveling through a blizzard and she was too sick to walk herself.

Because she arrived by ambulance she was brought into the ED. An ED doctor is much less likely to be familiar with an extremely rare disease. The doctor in question had in total 7 months experience. It is entirely likely that the parents knew more about Justina's disease and they certainily knew more about her daily care regimen than the ED doctor.

In the entire time that Justina was at Children's, they never once allowed her own gastroenterologist, from their own staff, to see her.

The situation stinks to high heaven. She had then, and has now a diagnosis by Tufts; to this day Tufts stands by the diagnosis.

Her condition has dramatically worsened since Children's locked her up in its psych ward and denied her treatment. Some of those changes may well be irreversible. It's no small wonder her parents have behaved badly...

[VA_Jill]

8. In my opinion

and I've read a lot about this (and tried to stay away from the right-wing blogs), Boston Children's comes across pretty badly. Their psych department has a particular axe to grind, called "medical child abuse", and they've apparently used it in more than a few cases. Read the Boston Globe articles on this case. If I lived in Boston, I would stay far away from the place.

The whole thing disturbs me, both as a medical professional and as a parent (though I'm no longer active as either!). I don't like the way Boston Children's immediately shut the parents out (like within 5 days) and almost immediately got the state involved; that smells. I don't like the idea of the state getting involved in what is essentially a dispute between doctors. I don't like a judge inserting himself into a situation where he has absolutely no knowledge. And I also don't like the fact that somehow we've let the right wing co-opt this case for their own purposes.

What Boston Children's did really should bother every parent. Stop and think; if your child had a rare or poorly-understood disease, and you were in an unfamiliar hospital, this could happen to you! It has happened to others. It has happened to people whose kids have osteogenesis imperfecta (OI or brittle bone disease); it has happened to a friend of mine whose multiracial child had "mongolian (dark pigmented) spots" on his spinal area…..both have been accused of child abuse.

Read this Boston Globe 2 parter on the case from last December. You might understand a little more about why the parents are upset with the hospital.
http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html

[magical thyme]

9. link to the judges decision

http://c.o0bg.com/rw/Boston/2011-2020/2014/03/25/BostonGlobe.com/HealthScience/Graphics/SCAN.pdf

Essentially, Justina's parents mouthed off to Children's Hospital and MA DCF and threatened to sue the CT facility that offered to take her.

Oh, and the "medical neglect" they accused the parents of consisted of following Tuft's directions in her care.

CT DCF in early January agreed that Justina's parents weren't fit (although how they determined that when she hasn't been home for over a year is beyond me), but has not made any effort to takeover her custody.

And the judge reviewed psychiatric and medical evidence and picked the diagnosis he favored.

I agree with pnwmom on this one. She's gone from ice skating to wheelchair bound, with progress described in an earlier article as being able to unlock her wheelchair.

Horrific example of government overreach, imo.

[hughee99]

10. It's difficult to understand how a state takes custody away from parents for a dispute

between medical professionals, especially given that the care the child is getting doesn't seem to be helping. I guess I'd have to read the judges ruling to see if there was more to this than I see in the article.

[LisaL]

11. I am amazed as well.

Justina certainly doesn't look to be in good condition after the treatment while in DCF custody.

[VA_Jill]

12. I'd like to know

just where Judge Johnston gets his medical expertise…….or is he in the direct pay of DCF or BCH? Something stinks in this case, big time. And why have we let the right co-opt it?

[magical thyme]

14. as I recall, some earlier articles showed links between the MA DCF and Children's

and between the judge and MA DCF.

[ripcord]

29. If nothing else you would think the judge would want a third indepedent diagnosis

Sounds to me like the judge is more upset about the way the family treated DCS than anything else.

[LisaL]

30. Sounds to me that way as well.

Children's hospital claiming it's "all in her head" sure didn't seem to help her condition. She appears to be in bad shape. My understanding is, Tufts had her on meds and vitamins for mitochondrial disorder. Since Children's doesn't believe she has mitochondrial disorder, I believe all the meds were stopped. Well now she is in a wheelchair, and she was able to ice skate prior to being admitted to Children's.
Yet that judge still insists she has somatoform disorder.

[magical thyme]

15. Parents Hail Small Victory for Justina Pelletier as Tufts Doctors Take Charge

March 4, 2014

By SUSAN DONALDSON JAMES

http://abcnews.go.com/Health/parents-hail-small-victory-sick-justina-pelletier/story?id=22766417


Justina Pelletier, the sick teenager who for the last year has been the center of a custody tug of war between her parents and the state of Massachusetts, will get treatment with her original doctors at Tufts Medical Center, a family court judge has ruled. ...

....Tufts confirmed that Korson will be part of a new medical team with other specialists, including a neurologist and gastroenterologist from Boston's Children's Hospital.

"Dr. Korson has agreed participate in the care of this patient, along with physicians at other hospitals," Tufts spokeswoman Julie Jette told ABCNews.com. "Other clinicians at Tufts Medical Center may be involved as well. They are working out details with the parties involved. We have nothing else to add at this time."


This is a tacit admission that Tuft's diagnosis was right all along. It's almost as if by grabbing custody of Justina and blaming the parents, the judge is protecting Childrens, MA DCF and himself from malpractice.

[LisaL]

16. Amazing, isn't it?

Justina is now in wheelchair despite the treatment she got while in the custody of DCF. Yet DCF still get to keep custody.

[magical thyme]

17. and the judge decided her disease is psychosomatic, but put her care back with Dr. Korman/Tufts

They fucked up. They fucked up big time and they know it. They've damaged her, possibly permanently, by withholding treatment for a year and trying to force her to do what her body was physically not capable of doing.

So they've circled their wagons and are blaming her parents for their fuck up.

[pnwmom]

24. I agree. I hope a higher court puts an end to this. These system has completely failed this family.

If this were my daughter and I were watching her deteriorate like this, I'd be profane and threatening lawsuits, too.

[blackspade]

20. Unbelievable.

[blackspade]

18. How is it that the 'treatment' she is 'receiving' on Boston

Is better than at Tufts?
She is worse off than she was, and in isolation for a year?
How is that good for her mental health?

[LisaL]

19. She appears to be in very bad shape after the treatment for the supposed mental condition.

She sure doesn't appear to be improving.

[blackspade]

21. Her psychiatrist sounds like a quack.

I'd be livid too if it were my kid.

[pnwmom]

23. Me, too. I'd be insanely mad. She was being treated by very respected doctors at Tufts.

The very respected psychiatrists at Boston disagreed with them.

In this kind of case, the parents should be allowed to choose which doctors were working best for their daughter. And judging by the new wheelchair, it's not the psychiatrists.

[pnwmom]

22. They have video of her ice-skating before she got the flu

and ended up in the ER at Boston Children's. The psychiatrists there didn't agree with the Tufts metabolic specialist's diagnosis, so they took her off the treatment prescribed by him and locked her up in the psych ward.

This just sickens me. A young member of our extended family has an illness that sounds similar to this girl's -- cyclic vomiting syndrome most likely related to a mitochondrial disorder. It took years to get the diagnosis but the proper medical treatment has turned her life around.

[DhhD]

25. Why has the State not gotten a second opinion on the mitocondrial familial DNA?

[LisaL]

26. They don't seem to want a second opinion.

From what has been reported, Children's didn't even allow Justina to see a doctor she actually came to Children's to see.

[pnwmom]

28. Right, the GI doc she need to see for GI symptoms. n/t

[pnwmom]

27. Why have the doctors at Boston not allowed the doctors at Tufts to even see her?

They don't want to be proven wrong.

[One_Life_To_Give]

31. When Justina turns 18 the lawsuit will cost Billions

Supposedly there is already a $40million lawsuit from a Swiss family over similar actions by Childrens and DCF.

This is one case where a Hippa exception really needs to be made. Neither Tuft nor Childrens are allowed to tell the press what is happening. Keep thinking there must be more to this than we are hearing. But as this case has dragged on it keeps appearing that the Nazis need an apology for being compared to Children's.