NOTE: Story has been updated. View updates chronologically at bottom of text.
BOSTON, MA — A judge has ruled that a Boston teen may continue to be held captive in a hospital and forcibly drugged… indefinitely. The tragic series of events began when a doctor discarded an earlier medical diagnosis and declared another, prompting objections from her parents and threats to discharge her from Boston Children’s Hospital to take her to get a second opinion. An epic battle of egos ensued, and the hospital decided that the parents’ insolence in challenging the doctor was tantamount to child abuse. Without a trial or having broken a specific law, the girl was stripped from her parents’ custody and the state of Massachusetts has kept her indefinitely detained in a hospital since February 2013. Based on the latest ruling, the girl may very well be locked in a psychiatric ward until she turns 18 years old.
A Difference of Opinion
Justina Pelletier is a 15-year-old Massachusetts girl who lived with her parents, had friends, went to school, and enjoyed ice skating and hiking. She was diagnosed three years ago by respected medical experts from Tufts Medical Center with mitochondrial disease, which causes muscle pain, weakness and loss of coordination. Despite her condition, she led the active life of a normal teenager.
That was before February 2013, when Justina came down with the flu and was admitted to Boston Children’s Hospital (BCH) to see her gastroenterologist, who had recently transferred from Tufts. A mere three days later, other doctors — primarily neurologist, Dr. Jurriaan Peters — dismissed her previous diagnosis of mitochondrial disease, and declared that her symptoms of difficulty eating and walking, were mostly psychological in origin. He diagnosed her with somatoform disorder, changing her diagnosis from a physical condition to a stress-related mental illness — a psychiatric disorder that causes sufferers to feel pain, although there is no physical cause.
When Justina’s parents, Lou and Linda Pelletier, challenged the diagnosis by insisting on a second opinion, they were told that they could not take her from the hospital. A swarm of hospital security guards gathered to remove them. Lou Pelletier actually called 9-1-1 when he sensed things were going abysmally wrong. “I told them ‘my daughter is about to be kidnapped by Boston Children’s Hospital,’” he said to the Blaze. Four days later, a judge awarded custody of Justina to the Massachusetts Department of Children and Families (DCF).
Doctors and hospital psychiatrists wield such power that merely suggesting that a patient’s problems are more psychiatric than physical paves the way for the hospital to call in the state child-protection agency. Once medical child abuse has been alleged, the state agency is legally obligated to investigate all complaints — and is all too willing to seize children from their families. As the Boston Globe points out:
“Many parents and their advocates complain, however, that the state agency, because of its lack of in-house medical expertise and its longstanding ties with Children’s, is overly deferential to the renowned Harvard teaching hospital.”
“They came in, and they said we cannot take Justina out of the hospital. They called DCF,” says Linda Pelletier, Justina’s mother. “It is kidnapping,” says Lou Pelletier, “We don’t even know what they are doing to her. No one will tell us about her treatment. They have kidnapped her, taken her off medications that worked and left her to suffer in pain.”
Ironically, the Pelletiers say Boston Children’s accused them “overmedicalizing” their daughter before taking her from them and restricting their access to her. Yet, behind the scenes, the hospital called DCF immediately after Justina’s parents challenged the somatoform diagnosis, alleging that they had abused or neglected her. “They were actually being accused of being too active in pursuing health care matters for their child,” West Hartford psychologist Dean Hokanson, who has worked with Justina for five years, told WTIC.
According to FOX CT, a report written in April by a Boston Children’s Hospital physician shows that Justina was taken off of her previously prescribed medication when she entered the hospital:
“Due to concerns regarding Justina’s regressive behavior changes around her family, the multiple medical procedures and care episodes she has been through … and both parents’ resistance towards recommended treatment plans for Justina … a child protection team was convened.”
The Pelletiers insist, and medical paperwork from Tufts Medical Center confirms, that every surgical procedure and medication that Justina received was approved by doctors. “All we want is Justina back. We don’t even know what we are supposed to have done wrong. They say we overmedicated her and forced her to have unnecessary procedures. But all we ever did was follow her original doctors’ orders.”
Justina’s original doctors have now been “cut out of the loop” in exchange for a new team that specializes in Somatoform Disorder. They moved quickly to dispute Dr. Korson’s working diagnosis of mitochondrial disease for Justina and accused her parents of medical child abuse. Dr. Korson’s requests to be included in the discussions regarding his patient would be subsequently ignored by both Boston Children’s and the state (DCF). Justina’s former doctor, Tufts Medical Center specialist Dr. Mark Korson sent an email to the Pelletier’s attorney regarding Boston Children’s Hospital, their team of doctors and the somatoform diagnosis:
“I am dismayed. … It feels like Justina’s treatment team is out to prove the diagnosis at all costs. … The (Boston Children’s Hospital) team has demanded that Justina be removed from the home. … This represents the most severe and intrusive intervention a patient can undergo … for a clinical hunch,” Dr. Korson wrote.
Locked in “Bader 5″
In April of 2013, Justina was moved from her previous room in the hospital to an area of the hospital called Bader 5, the psychiatric ward. Though she vehemently opposed the transfer, Boston Children’s informed Justina that the Commonwealth of Massachusetts — not her or her parents — would be making all choices regarding her future. Sadly, if the judge hearing her case does not put her custody back in the hands of her parents soon, then Justina may be forced to remain at the hospital until she turns 18 and can legally determine her own destiny. By July, the Pelletiers were informed that the hospital was ready to release Justina, still 14-years-old at the time, from the hospital, though not to them. The new team of doctors “demanded” that Justina be removed from the home and severe restrictions imposed on contact with her parents.
As the Pelletiers battle for custody of Justina, the Massachusetts Department of Children and Families only allows her parents to visit for one hour and make two twenty minute phone calls per week, and even those are monitored by hospital staff. Her older sister, Jennifer, claims that Justina says, “psychiatric staff have told her she is never coming home. They have apparently told her not to plan any homecoming parties because she isn’t going home. I don’t know exactly when or how many times she has been told this but Justina believes she is going to die in there.”
In the ten months since she was admitted to Boston Children’s Hospital, Justina’s condition has deteriorated to the point where her family says she no longer walks on her own and is now bound to a wheelchair. Her sister, Jennifer, says, “I don’t know what they are trying to do to her but they have destroyed her hope and trust. All we have ever wanted for Justina is for her to get better but she is getting worse.” If she didn’t exhibit the symptoms of Somatoform before she was admitted, her family says that she now does; “She is certainly listless and depressed now – it is like they have created those symptoms to suit their own ends.” Her father added, “I truly believe she is being used as a guinea pig for medical experiments.”
If this all seems a bit Kafkaesque, know that this is not the first time that Boston Children’s Hospital has used its child protection team to threaten parents with state investigations in order to get their way. The Boston Globe report on Justina Pelletier’s case claims at least five instances of “unusually contentious cases over the last 18 months involving Children’s Hospital and the Department of Children and Families.”
The DCF should be there to mediate between the two parties, but their lack of medical knowledge puts them at the mercy of the hospitals’ vastly larger experience pool. This would seemingly create a conflict of interest for the DCF when considering the allegations of medical abuse made by doctors and psychologists against parents and legal guardians. What must have begun as a well-intentioned plan to identify cases of medical child abuse and intervene on behalf of the patient has predictably expanded into a bureaucracy of “child protection specialists” who sling charges at parents simply because they disagreed with the hospital’s diagnosis and wanted to take their child elsewhere for treatment.
Parents, like the Pelletiers, are at the mercy of doctors who, according to Dr. Eli Newberger, “have enormous and really unchecked power.” Parents accused of medical child abuse risk losing custody of their children with little to no recourse against the byzantine state agency, all because an overzealous hospital staffer with an inflated job title just didn’t like them.
This case has pitted hospital against hospital, doctor against doctor, and parents against the state, with the life of a child hanging in the balance. There will not be any winners now, nor in the future, until the primacy of individual rights is restored to every citizen of every age in this country. Milton Friedman quoting John Stuart Mill perfectly embodies the plight of Justina Pelletier:
“The proper role of government is exactly what John Stuart Mill said in the middle of the 19th century in On Liberty. The proper role of government is to prevent other people from harming an individual. Government, he said, never has any right to interfere with an individual for that individual’s own good.”
She wants to go home; she deserves to go home.
UPDATE (12/20/2013): Court Rules Indefinite Detention May Continue
This Friday, December 20, Judge Joseph Johnston delivered a shocking blow to the Pelletiers, declaring that the state had met its burden for maintaining custody of Justina, and she will remain in their “protective” care indefinitely until the government rules otherwise. Justina will not be home for Christmas, as her parents had desperately hoped. She may not be coming home for a long time. Emotions were high, and the judge’s decision prompted angry outbursts of “Evil!” in the courtroom, according to the Boston Globe.
“I don’t understand how they can do this. I didn’t do anything wrong,” said Linda Pelletier as she left the courtroom, sobbing.
“It’s a ******* corrupt state” said her red-faced father, Lou, as he left.
The judge appointed a new guardian ad litem for Justina, and another hearing is scheduled for January 10th, 2014.
UPDATE (1/18/2014): Justina Transferred
The Boston Globe reports that Justina has been transferred out of the psych ward in Boston Children’s Hospital and into a residential program at Wayside Youth and Family Support Network, in Framingham, Massachusetts.
She remains in the custody of DCF and the court hearings are being shrouded in secrecy.
UPDATE (2/17/2014): Desperate Parents Break Gag Order, Allege Torture
February 14th marked a full year that Justina has been held hostage by Massachusetts social workers. Her parents — emotionally and financially drained — are growing increasingly disillusioned and vocal about the situation. There seems to be few legal and peaceful options left for them to reunite their family.
In desperation, Justina’s father has broken the court’s gag order on him talking about the oppression of his family. Lou Pelletier disclosed to the Blaze how his daughter is being punished by her captors if she passes too much information to her parents.
For a while Justina would write secret messages inside of the cards that she sent to her parents. She would write on the underside of the flap of a card in small lettering so the captors wouldn’t detect it. Mr. Pelletier said she would be “tortured” in ways that the doctors called “behavioral modification.”
“That’s what Kim Jong Il’s doing in North Korea, behavior modification. … No, no, no, no. It’s torture,” he said.
Lou revealed that the day his daughter was seized, he called 9-1-1 as hospital security guards gathered before taking his daughter. To his dismay, the police he called for help condoned the kidnapping.
“I told them ‘my daughter is about to be kidnapped by Boston Children’s Hospital,’” he said.
Mr. Pelletier says that even if Justina is released, she will not be the same. He and his wife worry that her listless, diminished condition could be “irreversible.”
“She needs physical therapy. She needs to be back on the vitamin cocktail. She needs to be treated for the goddamn diagnosis she had from the beginning,” Lou said. “I need to save my daughter. If we don’t do something, she is going to die.”
The family says their visitation has been reduced to one 20-minute phone call and one hour-long visit per week.
“Now we go back the 24th, a week from today, and I want to have all my guns blazing. We’re not going to make it much more,” Lou Pelletier said to the Blaze.
UPDATE (2/18/2014): Lou Pelletier Charged with Contempt of Court
Lou Pelletier’s calculated risk of going public has had the benefit of reaching the audience of Glenn Beck, and has been met with the financial assistance of concerned viewers of the interview. However, the vengeful, family-destroying Massachusetts Department of Children & Families (DCF) filed charges against Mr. Pelletier for doing the interview and breaking his government-imposed silence.
Whether Judge Joseph Johnston follows through with his threats to punish the Pelletier family for speaking about their own situation remains to be seen. The charges against Lou Pelletier will be weighed in court, and if sustained, he could face additional fines or even jail time.
UPDATE (2/24/2014): Justina to go to Foster Care Instead of Parents
A court ruled that Justina will leave the hospital, and go to a new set of parents, inflaming an emotional situation that has reached national attention.
Lou and Linda Pelletier appeared devastated upon hearing the decision. Lou shouted in anger and covered his face in his hands. Linda wept, had to be hospitalized after she collapsed after leaving the courtroom.
Justina’s father says that the family has been “teased with a carrot” with the hope that they could get Justina back. With her remaining in DCF foster care, it appears the court has been playing playing with the family’s emotions as much as it has been playing with Justina’s fate.
Justina’s father spoke out the following day on national television. “Our whole family was enraged with what went on,” he said.
“Everything we were hoping for to happen yesterday blew up,” said Mr. Pelletier. “From finding out the new medical facility — the people that were going to be in charge of her medical care — weren’t going to be her Tuft’s doctors… instead its going to be UMass Memorial in Worcester, Massachusetts, who know nothing about her.”
“Number two,” he listed, “the constitutional lawyers we had brought in to assist us were being blocked from seeing her.”
“Number three, which was crushing, to find out she is being moved from the facility she is in… to a DCF-run facility in Merrimack, Massachusetts, called the Shared Living Collaborative, which is a purely psych facility– no medical.”
Lou said after the emotional court session and his wife fainting in the hallway, he stormed back into the courtroom and shouted angry words at the judge.
“How can you look yourself in the mirror?!” he asked the judge.
He said that Justina’s health is critical. During a recent supervised visit — which include 2-5 DCF workers and police presence — he said Justina’s shirt lifted slightly to reveal “severe dark red lines coming out from where her port was, from her cecostomy tube. And that’s either a sign of poisoning, sepsis getting to the system, or some other critical thing. If we hadn’t seen it and raised a red flag, she could be dead today.”
UPDATE (2/27/2014): State Legislators Finally Speak Up
After more than a year of torment for the Pelletier family, two Massachusetts state legislators have finally spoken out against the injustice, and a resolution to release Justina from DCF custody will be introduced next legislative session, reported MyFoxBoston.
“The self-stated goal of the Department of Children and Families is to strengthen the link between families. Removing a child from her family is reserved for only the most egregious circumstances where evidence of malicious intent, negligence or the blatant inability to care for the child is present. No such findings are present in this case,” said Marc Lombardo (R-Billerica) said in a press release.
“The Pelletier case is a dispute between conflicting medical opinions,” said Jim Lyons (R-Andover) in his own release. “In my opinion, 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.”
Additionally, the Shared Living Collaborative wisely declined to accept Justina as a patient, citing the national controversy. So for now, Justina remains in Framingham under the same conditions which she has been held.
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Help the Pelletiers as they try to keep up with legal fees: www.freejustina.com
Please put pressure on those who can make a difference and help to return Justina home.
Judge Joseph Johnston: LinkedIn
Child Protection Program Office: 617-355-7979
Originally responsible for encouraging Justina being taken from her parents (although she has now been transferred) :
Dr. Jurriaan Peters
300 Longwood Ave. Boston, MA 02115
Phone: (617) 355-6117 (Office)