Thursday, February 27, 2014

The Case of Justina Pelletier

Their only recourse was the media. Justina Pelletier’s family had no other way to fight the Boston Children’s Hospital and the Massachusetts Department of Children and Families.

The Boston media has been covering the story. Megyn Kelly has reported extensively on it for Fox News. ABC News had a good story about it yesterday. Last week the Huffington Post ran a well written jeremiad about the indefensible and deplorable abuse of state and psychiatric authority.

(For the record, the HuffPo article was written by an advocate for people who are suffering from Justina's condition.)

It is not a story of left versus right; it’s not even a story about parents versus physicians. It’s a story about one group of physicians against another, and about the abuse of state power.

Now, Massachusetts legislators are getting involved and the courts are apparently paying attention.

It took a year.

At issue is Justina’s mitochondrial disorder. There is no test that can identify a cause, so the disorder is diagnosed by a constellation of symptoms. Physicians observe how well or poorly the patient responds to treatment. If she responds well, the diagnosis is considered affirmed.

The Huffington Post outlined the medical problem:

Justina and her older sister struggle with an invisible condition called mitochondrial disease. It is caused by a disruption in the cellular energy centers of our bodies, the mitochondria. The crisis inside her cells isn't always apparent on the outside. But inside, they are teetering on a precarious cliff where the body's demands exceed the body's ability to supply enough energy to live and to thrive. For mito patients, it's more than just being tired. It's never having adequate fuel to operate necessary functions of our body. Justina's gut stopped working a couple of years ago, a common problem for mito patients, resulting in a tube to help her digest and eliminate food. Mito patients also struggle with muscle weakness, pain, memory loss, erratic blood pressure, vision problems, hearing problems, and debilitating fatigue.

Justina’s older sister also suffers from this condition. Since the older sister had been successfully treated at Tufts Medical Center, a leading facility for this condition, Justina's parents brought her there for treatment.

Last year, when Justina was suffering from flu-like symptoms, her physicians at Tufts recommended that she be taken to Boston Children’s Hospital. The physicians at BCH examined Justina for a couple of days and decided that her problems were psychiatric, not medical. They decided that she was suffering from a somatoform disorder, something that used to be called conversion hysteria.

The physicians at BCH did not consult with Justina’s physician at Tufts.

The Boston Globe explains what happened at BCH:

Then last February, Justina was brought to Children’s Hospital after suffering severe intestinal issues, and having trouble walking. Doctors there, in a matter of a few days, concluded that her problems were primarily psychiatric, and that the parents were ignoring the root cause of her problems and pushing for unnecessary medical interventions.

When the parents sought to discharge Justina, the hospital filed medical child abuse charges, which were ultimately supported by the state and later a juvenile court judge.

Children’s Hospital, while still monitoring her medical care, has said in a statement that it has been pleased with the girl’s progress in and out of the hospital. Justina’s parents, however, contend that her condition has worsened in the past year, and that she can now only move around in a wheelchair.

For emphasis, parents who relied on expert physicians, and who agreed with them that Justina was suffering from a medical condition, were charged with “medical child abuse.”

All indications suggest that Justina’s condition has deteriorated. Why are these physicians pleased with her progress?

Since the parents wanted to return Justina to Tufts in order to continue her treatment, the hospital and a state agency and a judge took custody of the child. They placed her in a psychiatric clinic and allowed her parents only brief, limited supervised visits. For good measure, the court eventually hit Justina’s parents with a gag order prohibiting them from speaking out in public about the issue.

When Justina’s father went on the Megyn Kelly show to plead his case, he was accepting the possibility that he might be held in contempt of court.

The Huffington Post reports the horror:

Justina was diagnosed with a psychiatric condition at Children's Hospital, moved to a locked psychiatric unit, and was not treated for her current illness or for her mitochondrial disease, which necessitates a daily regimen of cellular supplements and dietary adjustments. Her body weakened. She complained she could not walk, felt nauseous, and had trouble eating. She was told her symptoms were all in her head, and behavioral therapies are forced upon her. Justina's doctors -- who had treated her at length -- were never consulted. Family counseling was never offered as she got sicker, and the months went on.

Think about it: this has been going on for a year!

It is cold comfort to see that these psychiatrists did not try to cure Justina with the talking cure. And yet, why would psychiatric professionals ever imagine that cutting a child off from nearly all contact with her family would improve her mental health? Shouldn’t these professionals be investigated?

In any event, the Huffington Post reports on the psychological damage inflicted, not only on Justina but also on the Pelletier family:

What none of the media is talking about is how shattered this experience has left this family. The damage is irreparable. Justina's parents are consumed with grief, fear, suspicion, and desperation. And, Justina, the child who is "protected" by the law, has lived without the comfort and protection of a mom and dad and sisters for more than a year. Their lives have been destroyed. At what point did we become so detached that we can let this type of chaos and tragedy ensue for a week, much less for over a year? Where are the people who will stand up and insist "enough is enough!"?

A few days ago the juvenile court judge ordered Jessica to be transferred to a residential psychiatric clinic, one where she would not be able to receive any treatment for her mitochondrial disorder. Justina’s mother passed out in the court and was removed from the building on a gurney.

Recent reports suggest, however, that the public outcry and the interventions of several Massachusetts state legislators might lead the judge to release Justina to her parents.

Fox News Connecticut filed this report yesterday:

There were dramatic new developments Wednesday in the case of West Hartford teenager, Justina Pelletier, that could pave the way for her release from Massachusetts State custody.

Justina Pelletier’s next hearing is slated for March 17, but a group of Massachusetts lawmakers is pushing for an immediate release.

According to Mass. State Representative Marc Lombardo, as of 5 pm Wednesday, he and Rep. Jim Lyons had 12 representatives backing a resolution that would start the process of releasing Justina Pelletier to her parents right away.

Rep. Lombardo will raise the resolution at the next House of Representatives session, which is scheduled for March 5.

“The Pelletier case is a dispute between conflicting medical opinions… the decision on which medical treatment to adopt should rest with the parents, not with DCF. The Department’s heavy-handed, unjustified interference with the rights of these parents is an example of what is wrong with this agency,” said Rep. Jim Lyons (R-Andover).

I for one would like to know the identities of the medical professionals who are behind this? If they are confident about their diagnosis and treatment recommendations, they should defend themselves in public.


Sam L. said...

I concur with your closing statement.

Would be nice to see the state and the BCH sued for damages, too.

Stuart Schneiderman said...


Anonymous said...

In some spots you misidentify Justina as "Jessica".

Stuart Schneiderman said...

Thanks for the heads up. I think I corrected all of them now.

Lastango said...

I'm not surprised in the slightist -- Massachusetts is the state that wielded its power to persecute and crush the Amirault family. As the evidence grew that a vast travesty of justice had been perpetrated against the Amiraults, the state -- up to the highest levels of its government -- became ever more entrenched in its positions. The system was now protecting itself. To the state, nothing was more important than the defense of its own instruments and prerogatives.

Unfortunately, this is not ancient history. The system and its ethos of absolute power survives unbowed. It is no accident that Martha Coakley, a key player in the destruction of the Amirault family, is now in her sixth year as Attorney General of the State of Massachusetts. Evidently, she is running for Governor.

anonymous mom said...

somewhere I saw a boston globe article, not sure which one ...maybe december 2013? that had the name of, and quotes from, the pediatrician who is in charge of the child protection committee at the Childrens hospital. According to the paper, she admitted she never even met with the parents. Nice, huh? In addition, something to ponder: (1) if the other physicians in whose care Justina had already been were a bunch of quacks, then why do they still have licenses? Why aren't the physicians at this hospital ethically obligated to report that to the state licensing board, and why haven't they? the fact they have made no effort to do that tells us something. (2) if all the mitochondrial disease experts in the united states are treating patients inappropriately and overdiagnosing it, then where are the peer-reviewed, published studies and articles by the doctors from these hospitals to establish that? where is even any sort of public information campaign to warn all of us parents? (3) if the parents are so abusive, why have their other children been allowed to remain with them, why is the other daughter still receiving treatment for mitochondrial disease, and why have there been no actual charges against the parents?

Susan said...

Dr. Jerome Groopman, the great AIDS/cancer doctor writes movingly in "Second Opinions" of the frightening near-fatal misdiagnosis his firstborn son received at Boston Children's Hospital....the child was only saved by Groopman's contacting at the 11th hour a former science professor in Cambridge...

Anonymous said...

I am sorry any family has to go through this, but I don't believe that this girl was kidnapped and made a ward of the state so the state could use her as a guinea pig in medical trials. The hospital can't tell their side of the story; she's a minor. There absolutely is more to this story than the media is reporting. Watch the Glenn Beck interview with the father, listen to Bachmann state as fact this girl was made a ward of the state so she couldn't be a medical guinea pig--like Obama wants to do to all of the central American kids flooding our border--and read the judge's decision to remove Justina from her parents. Isn't it possible we don't have the full picture here? Remember..this is a minor so the hospital legally can't tell us their side of the story.