A Connecticut teenager caught in a yearlong custody fight between her parents and Massachusetts child protection officials will be moved to a new foster care program on the North Shore, a ruling suggesting she remains medically stable but one that triggered an anguished response from her parents when it was announced by a juvenile court judge Monday.
Lou Pelletier, the father of 15-year-old Justina, shouted angrily in the courthouse corridor, and her mother, Linda, fainted and was taken to the Massachusetts General Hospital emergency room.
The case drew national attention when Boston Children’s Hospital lodged a “medical child abuse” complaint against Justina’s parents last year amid a dispute over her diagnosis, leading the state to take custody and keep her hospitalized for almost a year.
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“She’s hanging by a thread,” Lou Pelletier said of Justina on Monday night, speaking by phone from Mass. General, where his wife was recovering. “I want her home.”
He said the family is upset that Justina remains in state custody and is moving from a Framingham residential treatment center to a place that is even farther away from their home in West Hartford, Conn., making their permitted weekly visits more difficult. He said the girl is going to Shared Living Collaborative, a program in Merrimac that includes a daytime special education and treatment program in coordination with private foster care living arrangements.
Pelletier also said Juvenile Court Judge Joseph Johnston, who issued the ruling Monday, is reviewing a plan to have UMass Memorial Medical Center in Worcester primarily oversee his daughter’s medical care instead of Children’s Hospital.
The decision to involve UMass Memorial, if finalized, is likely to defuse tension between two Boston hospitals involved in the emotional saga. The parents say that Justina suffers from mitochondrial disorder, a group of genetic ailments that affect how cells produce energy, often causing problems with the gut, brain, and muscles. Justina had been treated for this condition by doctors at Tufts Medical Center in Boston.
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Then last February, Justina was brought to Children’s Hospital, where doctors in a matter of days concluded that her difficulty in eating and walking were primarily psychological in origin and that she suffers from somatoform disorder, which describes a patient with symptoms that are real but for which no physical or biological explanation can be found.
Justina stayed at Children’s, for much of the time in a locked psychiatric ward, until last month, when she was moved to Wayside Youth and Family Support Network in Framingham.
The case has exposed the often fuzzy line between psychiatric and physical illnesses and highlighted the growing use of the term medical child abuse, which can be attached to parents seen to be pushing for unnecessary and potentially harmful interventions for their children.
The Pelletiers have said that during the weekly visits that the state has allowed them to have with Justina, they have noticed a major decline in her condition, including that she moves around only in a wheelchair now. Both said that her stomach is bloated with strange red lines running along her abdomen, and that they fear she has some kind of raging infection.
“It could be some kind of protein deficiency, or some kind of poison in her system,” the father said.
On the other hand, the state’s decision to place her at an educational and treatment facility would suggest that officials believe she is medically stable. The Department of Children and Families has declined to say anything about Justina’s condition, citing client confidentiality. But Children’s Hospital said in a statement Monday, “We are pleased with the progress our patient made when she was at Boston Children’s and with her continued progress.”
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Lou Pelletier spoke about Monday’s hearing despite a far-reaching gag order from Johnston preventing the family and other parties from speaking to the media about the case, and a complaint by the state child welfare agency last week that he had violated the gag order several times already.
Jeffrey Pyle, a lawyer who specializes in free-speech issues for law firm Prince Lobel in Boston, told the Globe that such “a blanket gag order is rare.” He said the order was “breathtaking” in scope because it goes far in silencing what the parents can say over a profound issue.
Several conservative Christian organizations and the American Civil Liberties Union of Massachusetts said they may step in to defend the Pelletiers’ rights to speak out about the case. Two lawyers — Mathew D. Staver of Liberty Counsel and David C. Gibbs of the National Center for Life and Liberty — flew to Boston and appeared in court, hoping to defend the parents’ rights to publicly speak out about the fate of their daughter. But they were not allowed to participate in the proceedings pending further review by the judge.
Staver insisted the Pelletiers have a strong case. He said the gag order is not in writing, but part of an oral order issued late last year. He said, referring to a transcript, that it states that “no one is to talk about this case at all to any media, whether it is local here or local to the family in Connecticut.”
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Meanwhile Jessie Rossman, a staff attorney with the ACLU of Massachusetts, said Monday that it has been reviewing the First Amendment issues arising out of the gag order and that “we are deeply concerned about multiple aspects.”
She said no final decision has been made about whether to join the case, “but we are looking at ways that we can be helpful.”
Another court hearing before Johnston on Justina’s future placement and custody has been scheduled for March 17, and another hearing about the validity of the gag order has been set for March 24.
Lou Pelletier said he is preparing additional legal action against the Massachusetts Department of Children and Families.
“I’m going to make sure the world comes down on this state,” he said.
Patricia Wen can be reached at patricia.wen@globe.com.
Correction: Because of incorrect information provided to the Globe, a previous version of this story gave an incorrect name for a foster care facility where state officials were considering moving Justina Pelletier.