Politics & Government

New Details Emerge in West Hartford Family's Custody Dispute with Massachusetts DCF

Justina Pelletier, 15, has spent more than 10 months living at Boston Children's Hospital.

This article was written and reported by Patch Editor Ted Glanzer

With last Friday’s ruling from a Boston family court judge, the bizarre and perplexing case of Justina Pelletier will continue at least until Jan. 10, guaranteeing that the 15-year-old girl will not spend Christmas with her family in West Hartford.

Pelletier’s father Lou, mother Linda and two of Justina’s sisters were visibly distraught when Judge Joseph Johnston issued his ruling that Justina was to remain in the custody of the Massachusetts Department of Children and Families until the next hearing date.

Johnston also ordered a new guardian ad litem investigator to re-examine the case.

Though a strict gag order remains in place, Lou Pelletier could be heard proclaiming “Evil!” when he exited the courtroom.

Find out what's happening in Manchesterwith free, real-time updates from Patch.

It’s the latest chapter in the ongoing saga that has seen Justina in the custody of Massachusetts DCF since February, staying primarily in the psychiatric ward of Boston Children’s Hospital.

On Feb. 10, Justina, who has been diagnosed and treated by Tufts doctors for mitochondrial disorder, a rare genetic disease, was sent to Boston Children’s Hospital for a bout with the flu.

Find out what's happening in Manchesterwith free, real-time updates from Patch.

Justina’s physician at Tufts, Dr. Mark Korson, wanted Justina to go to Children’s to see a gastroenterologist who had moved from Tufts to Children’s, according to the Boston Globe.

But after she was admitted to Children’s, doctors there disagreed with Justina’s diagnosis and instead said that she had somatoform disorder, a mental illness characterized by pain and gastrointestinal symptoms that have no identifiable physical cause.

Children’s doctors said that Justina was the victim of “medical child abuse,” in which Lou and Linda Pelletier subjected Justina to unnecessary medical procedures (such as an appendectomy and a cecostomy) and medications (including potent laxatives), while denying her appropriate psychiatric care, the Globe reported.

The Globe obtained hospital documents that indicated that the Pelletiers were argumentative with physicians and that Linda Pelletier was allegedly providing subtle cues to Justina on her condition.

The treating physician at Children’s wrote in his notes that “he was concerned about the care she had received from numerous providers in different facilities and states, the number of invasive procedures Justina has been submitted to, [and] the black-and-white thinking of Mom,’” the Globe reported.

A day later and in contravention to Justina’s treating physicians at Tufts, a Children’s psychologist diagnosed Justina with somatoform disorder.

When the Pelletiers attempted to check Justina out of the hospital, Children’s contacted the commonwealth’s DCF to take emergency custody of the girl.

It’s not the first time the Pelletiers have been accused of medical child abuse. Lou and Linda were previously investigated by the Connecticut Department of Children and Families, but that case was dismissed, according to the Globe.

It’s been noted that parents of children with rare, chronic diseases can be difficult to deal with due in large part to the stress of managing that child’s care.

Further, one of Justina’s sisters also has mitochondrial disorder, which has a genetic component that can be passed on to other family members.

Regardless, Children’s is standing by its diagnosis and has refused to allow Korson to participate in Justina’s care going forward, even though he has treated her for over a year.

Members of the mitochondrial disorder community - including the support group MitoAction - have been monitoring Justina’s case and said that Boston Children’s actions could have a ripple effect that goes beyond her.

“A lot more people are afraid to check into Boston Children’s,” said Julie Gortze, a member of MitoAction. “People all over the country go to Boston Children’s.”

Gortze noted that Boston Children’s, which is a teaching affiliate for Harvard Medical School, is one of the pre-eminent hospitals in the country. Many people will fear taking advantage of Children’s excellent care and reputation because of this and other recent cases, Gortze said.

Indeed, the Globe noted that there have been five cases, including Justina’s, in the last 18 months in which Children’s has contacted DCF over disputed medical diagnosis that led to the possible termination of parental rights.

It has led some to question whether Children’s is looking out for the best interests of the children involved or engaging in medical hubris, particularly in Justina’s case, where a respected doctor who has overseen her care has had his diagnosis trumped by physicians who had treated her for just a few days.

“We in the mito community feel like this is an incredibly important case for raising the awareness overall and certainly for this family,” said Philip Borden, the chair of the board of directors of MitoAction. “It seems incredibly wrong that she has been at Children’s for this long.”

Jim Ianiri, a Boston-based attorney who advised the Pelletiers and other families in custody issues with Children’s, said that there are some Children’s doctors who do not believe that mitochondrial disorder is a legitimate disease.

With Children’s reputation as well as DCF’s lack of staffing, a tremendous amount of deference is given to Children’s child custody team.

“They think it’s entirely psychological in nature. They use the child protection team as coverage and leverage,” Ianiri told The Blaze.

The Globe noted that, in Justina’s case, the state’s social worker filed an affidavit with the family court judge that quoted Children’s professional staff extensively, but did not mention Dr. Korson - Justina’s treating physician - at all. The social worker in the affidavit said that it was unknown where the Pelletier’s picked up Justina’s diagnosis and quoted a Connecticut pediatrician who said that Lou and Linda Pelletier had doctor shopped to find a diagnosis they preferred.

The affidavit, according to the Globe, did not mention that the social worker had interviewed Korson and that he had diagnosed Justina with mitochondrial disorder.

With doctors disagreeing over Justina’s diagnosis, a state agency maintaining custody over her and a judge withholding a decision on the matter, there is but one thing that is certain.

“I know the family was looking forward to having Justina come home for Christmas,” Borden said. “That’s obviously not going to happen.”


Get more local news delivered straight to your inbox. Sign up for free Patch newsletters and alerts.

We’ve removed the ability to reply as we work to make improvements. Learn more here