Justina Pelletier was 14 in 2013 when she landed in a locked psychiatric unit at Boston Children’s Hospital, temporarily a ward of the state. Her parents stood accused of medical child abuse as they clashed with the hospital’s doctors over her diagnosis and care.
Now, nearly seven years after their high-profile standoff, the Pelletiers’ malpractice lawsuit against the Children’s providers who treated their daughter is slated to go on trial Tuesday in Suffolk Superior Court — pending a late appeal by Children’s to delay the proceedings until a judge sorts out questions about alleged civil rights violations involving the hospital.
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The Connecticut teen’s yearlong odyssey at Children’s ignited a firestorm about whether medical professionals should override parental rights when there is a dispute over treatment of a complex illness.
She had been rushed to Children’s after receiving treatment at Tufts Medical Center for mitochondrial disease, a group of rare genetic disorders that affects how cells produce energy. But the Children’s doctors determined that Justina’s myriad health problems were largely psychiatric, and saw her parents’ refusal to cooperate as medical abuse.
Pelletier and her parents are suing the hospital and the providers for allegedly violating their civil rights by telling them the state was going to take Justina away if her parents didn’t consent to the doctors’ treatment plan and by barring them from seeing her. They also allege negligence by the four providers for treatment decisions that ignored plans put in place by her doctors at Tufts.
Linda and Louis Pelletier were reunited with their daughter in 2014 after the lengthy fight in 2013 but have remained largely out of the public eye since then. They did not return calls about the lawsuit, and their lawyers declined to comment.
But their court filings state: “Justina has suffered severe and debilitating psychiatric trauma as a result of being held against her will in a locked psychiatric ward, isolated from her friends and families, and enduring several months of treatment in which her physical symptoms and disease were denied by her primary caregivers.”
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The documents also say Justina’s parents suffered “incredible emotional and financial hardship” while fighting for custody of Justina, spending all of their savings, and eventually going bankrupt.
They are suing for unspecified damages.
The teen’s plight captured national headlines and attracted an array of vocal supporters, from conservative Christians and critics of psychotropic drug use to online activists. Patient advocates say parents still encounter problems, especially in seeking help for children with complex medical issues like hers.
“We often hear stories where families are accused of medical child abuse because of a lack of understanding of the disease, and I think that’s in the back of every parent’s mind,”said Kira Mann, the chief executive of MitoAction, a Boston-based advocacy group for patients with mitochondrial disease.
The parents say Children’s doctors ignored the conclusions and advice of Justina’s doctors at Tufts Medical Center, where she was receiving treatment for mitochondrial disease. The Pelletiers had taken Justina to Children’s in February 2013 because her primary specialist at Tufts suggested she be seen by her longtime gastroenterologist, who had moved to Children’s.
Children’s doctors ran tests but deemed Justina’s perplexing constellation of symptoms — severe gastrointestinal problems, slurred speech, and trouble walking — largely psychological. They said her medical records suggested her physical problems were fueled by her parents, who, they said, exaggerated her symptoms, sought aggressive treatments, and ignored recommendations for mental health services as part of Justina’s care while at Tufts.
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The Tufts staff in 2011 had filed an allegation of neglect against the parents with the Connecticut child protection agency, but those allegations were later dismissed. The Pelletiers also had run-ins with doctors in Connecticut.
At Children’s, relations between the hospital and the family quickly devolved, as the Pelletiers demanded Justina see her former specialist or be allowed to go to another hospital, and Children’s doctors pushed back, citing concerns for the teen’s safety. They contacted the state Department of Children and Families to report suspected medical abuse by her parents. DCF took custody of Justina and had primary responsibility for her care during the next 16 months.
The Children’s providers who are accused of negligence in the lawsuit are Dr. Jurriaan Peters, a neurologist; Simona Bujoreanu, a psychologist; and Dr. Colleen Ryan, a psychiatrist.
The suit also alleges negligence by Dr. Alice Newton, an outspoken pediatrician and child abuse specialist who has since left Children’s. Newton has drawn praise from some colleagues, but also withering criticism from some child advocates for her role in other alleged child abuse cases. Newton now works at Massachusetts General Hospital.
Newton’s attorney and lawyers for the other doctors also declined to comment.
Children’s, in a statement to the Globe, said that Justina’s clinical team delivered “high-quality, compassionate care” and acted in good faith.
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“We will vigorously defend the care our clinicians provided and unequivocally refute the allegations that are being made against them,” the statement said.
The Department of Children and Families said it has made significant changes since the battle over Justina’s care and custody, including the creation of DCF’s first-ever medical unit, with seven pediatric nurses, 29 medical social workers, a part-time child psychiatrist, and a pediatrician leading that team. The department was criticized by advocates for not having its own in-house medical team, relying instead on Children’s doctors in deciding to take custody of Justina.
A DCF spokeswoman said the medical unit is consulted by health care specialists and DCF social workers on medically complex cases, including investigations about alleged child abuse.
Exactly how common medical child abuse cases are is unclear. They are not tracked in Massachusetts, according to Maria Mossaides, the state’s child advocate. But allegations of medical child abuse nationally have risen in recent years, several medical specialists said.
The Massachusetts Health & Hospital Association said most academic medical centers have long had “ethics consultation teams’’ that provide recommendations when a care team needs help in “difficult patient care management situations,’’ and in instances where the team and family don’t agree on a plan of care.
But Dr. Stephen Boos, the medical director for the team that handles child protection cases at Baystate Medical Center in Springfield, said his hospital is just now contacting others across the country to see how they handle these complex, emotionally charged situations in hopes of adapting some approaches for use at Baystate.
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“What happens when families come to the conclusion something is wrong, and maybe that’s contributed to by doctors who give them feedback and inflame their concerns?” Boos said. “The parent is honestly trying to do their best, but it’s still possible they could be wrong and it’s harmful to the child.
“It’s a complicated issue in deciding what the truth is,” Boos said, “and managing it.”
Kay Lazar can be reached at kay.lazar@globe.com Follow her on Twitter @GlobeKayLazar.