John Tlumacki/globe staff
Nearly two years after she returned home in the arms of her father, Justina Pelletier was back in the spotlight Thursday, speaking in a small, slightly shaky voice about the 16 months she spent in state custody, much of it in a locked psychiatric ward.
Justina, whose case drew national attention to the power of medical professionals to override parental rights, said she remains outraged that she was placed in state custody in 2013 after Boston Children’s Hospital accused her parents of interfering with her care.
The 17-year-old Connecticut girl clutched a purple stress ball, fingernails painted turquoise, as she spoke from a wheelchair in front of the State House, where her parents had convened a press conference to discuss the lawsuit they recently filed against Children’s Hospital.
“I’m very angry, and I just don’t understand how this happened, and I just really don’t want this to happen again to another family,” said Justina, who was with her parents, two of their attorneys, and a family spokesman from the Christian Defense Coalition.
She was taken into state custody three years ago after Children’s determined that her many health problems were the result of psychiatric issues and that her parents were pushing for her to undergo unnecessary treatment. The Pelletiers vehemently disagreed, pointing to the opinion of doctors at Tufts Medical Center, who said Justina suffers from mitochondrial disease, a rare genetic disorder that affects how cells produce energy.
On Thursday, Justina criticized her treatment at Children’s Hospital. “They really treated me badly,” she said, looking older and more mature than when she was last publicly seen, being carried into her home by her father after being released from state custody. “They didn’t really care. It was awful.”
Boston Children’s Hospital said in a statement that it “welcomes the opportunity to vigorously defend the medical care it provided to Justina Pelletier.”
“We are committed to the best interests of our patients’ health and well-being, according to the high standards we follow for every patient placed in our care,” the hospital said. “Out of respect for the patient’s privacy and the ongoing legal process, Boston Children’s is unable to provide further comment about the specific issues of this case at this time.”
Justina’s parents, Lou and Linda Pelletier, sued Children’s Hospital in Suffolk Superior Court this month, accusing the renowned institution and four of its doctors — Jurriaan Peters, Simona Bujoreanu, Alice Newton, and Colleen Ryan — of gross negligence and civil rights violations. The lawsuit seeks unspecified monetary damages.
“There’s been enormous financial impact on them,” said Kathy Jo Cook, a Boston attorney who is representing the Pelletiers in their lawsuit. “You can imagine if you couldn’t work for 18 months because all you were doing was driving back and forth from Connecticut to Children’s and trying to figure out how to get your child home.”
Last year, the Pelletiers filed for bankruptcy, according to court records.
They also faced foreclosure on their home but were ultimately able to settle their mortgage payments using money from a fund called “A Miracle for Justina” that was controlled by another daughter, Jennifer, court records show.
Lou Pelletier said he is suing Children’s Hospital because he doesn’t want other parents of children with complex medical problems to fear losing custody if they have to seek emergency medical care at a hospital.
“This is not about revenge,” Lou Pelletier said. “This is about making people accountable and making the medical community think twice before they take actions that can do damage to a child and a family that can be irreversible.”
Justina was being treated at Tufts Medical Center for mitochondrial disease when her parents brought her to Children’s Hospital with gastrointestinal problems in 2013.
Doctors at Children’s concluded that she was a victim of medical child abuse as a result of her parents interfering with her care.
A juvenile court judge, relying on the opinion of those doctors, removed Justina from her parents’ custody. She was placed in a locked psychiatric ward at the hospital, where, her parents say, she was denied an education and not allowed to attend Mass.
Children’s Hospital said that patients and their families have access to the hospital’s multifaith chaplains and tutors.
Justina’s case became a rallying point for Christian conservatives and parent activists, who accused the hospital and state officials of violating the Pelletiers’ rights to make medical decisions for their daughter.
Under mounting pressure, the same judge who had placed Justina in state custody returned her to her parents’ care in June 2014, saying there was “credible evidence that circumstances have changed” and that her parents “have been cooperative and engaged in services,” including individual therapy for the teen and family therapy.
Justina said that since returning home, she has undergone several surgeries and is “doing a lot better.” She said she rides horses to build strength and attends a school for children with learning disabilities.
“I just really, really want them to get what they deserve,” she said of the doctors at Children’s Hospital. “And I really, really want to walk again and skate.”
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