Parents lose custody of teen because of disputed medical diagnosis

Justina’s is only allowed 2 family members per visit, once per week, for one hour. 

 

BOSTON, MA — Caught up in an epic battle of egos, the life of 15-year-old Justina Pelletier hangs in the balance as she remains held against her will in state custody. Her parents took her to Boston Children’s Hospital on a referral from her specialist ten months ago, and she has not been allowed to leave since. The fight over her medical treatment and parents’ custody has grown to include two hospitals, more doctors than caregivers, and the state government of Massachusetts.

This past December 14th marked exactly ten months since Justina Pelletier was taken from her parents and placed in the custody of Boston Children’s Hospital (BCH). Local news station, FOX CT, alleges that internal documents that they have obtained show that doctors called in child protection specialists (DCF) at the first sign of disagreement between the Pelletier family and their medical experts. Boston Children’s denied that this is the case in an email to FOX CT (Connecticut):

“The Hospital is not the custodian or the legal guardian of the patients in its care, nor is it affiliated with any state agency. Our staff are caring and supportive professionals who aim to provide the best and most appropriate care for each and every child, regardless of diagnosis.”

Justina Pelletier enjoyed ice-skating before being confined to Boston Children’s Hospital.

Justina 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 15-year-old and enjoyed ice-skating, hiking and spending time with her family.

That was before February, when Justina came down with the flu and was admitted to Boston Children’s Hospital 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 instead diagnosed her with somatoform disorder. This, in essence, changed 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.

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. Unfortunately, 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.”

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 and were promptly escorted out of the hospital by security. Four days later, a judge awarded custody of Justina to the Massachusetts Department of Children and Families (DCF).
 

“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.

Justina Pelletier’s family is only allowed two twenty-minute phone calls with her per week.

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 Pelletier’s 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.

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.

BCH issued the Pelletiers “guidlines” for their daughter’s care which include “No Second Opinions.” 

 

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.”

Justina Pelletier with her mother during one of her weekly visits allowed by the hospital.

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 Friday, December 20, the final decision in the Justina Pelletier case is expected to be handed down. If she is not returned to the custody of her parents at the conclusion of the hearing, she will likely remain in foster care until she turns 18 and is legally old enough to say otherwise.

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.