For years, Justina Pelletier endured intense pain, mysterious symptoms that left her family in anguish, and led to a bitter standoff with her doctors over her care.
On Monday, seven years after the Connecticut teenager was placed in a locked psychiatric unit at Boston Children’s Hospital, she took the stand in her family’s malpractice suit against her doctors and caregivers.
In a small, wavering voice, she chronicled the nine months she spent in lockdown at age 14 against her parent’s wishes after doctors accused the couple of interfering with her treatment. She recalled the pain of being taken from her parents, leaving her with a separation anxiety so intense that she still sleeps with her mother. Her nightmares are frequent.
The terror always revolves around being removed from her parents, she said. “I would get taken away,” she said, describing her fear.
Now 21, Pelletier said that since having her colon removed in February 2018, her hospital visits have subsided.
“I don’t have any pain anymore,” Pelletier said.
Pelletier’s testimony came one week into the civil trial in Suffolk Superior Court against the renowned pediatric hospital and four of Pelletier’s doctors and caregivers.
Linda and Lou Pelletier were locked in constant dispute with doctors and other caregivers at the hospital over their daughter’s diagnosis and treatment. Relations at the hospital grew so acrimonious that the Pelletiers lost custody of their daughter after doctors and state child welfare officials concluded that they were acting against her best interests and interfering in her treatment.
It was excruciating stomach pain from severe constipation that prompted her and her mother in January 2013 to travel from their West Hartford, Conn., home to Children’s Hospital, in an ambulance, in the snow, to seek treatment.
Less than a month into her stay there, on Valentine’s Day 2013, her parents were whisked away from the hospital by men clothed in black, she told the jury.
“I didn’t get to see them anymore,” she said.
Pelletier had never spent a night away from home without her mother.
“All of a sudden I just didn’t get to see her," she said.
The hospital’s only explanation: “They said that I’d get better faster, but they really didn’t say why,” she said.
Medical notes, records, and e-mails between caregivers describe Pelletier’s parents as difficult, disruptive, belligerent, and accusatory, according to court records.
The Pelletier case has driven headlines, ramped up an unlikely coalition of advocates and stands, to some, as a symbol of doctors’ powers to override parental rights.
After Pelletier’s parents were banned from the hospital, it would be a week before she would see them again. From then on, they were allowed once a week supervised visits on Fridays. Phone calls were limited to 20 minutes per week, always with someone listening in.
Doctors and caregivers at the hospital suspected that some or part of Pelletier’s symptoms might be psychologically driven, or a type of somatoform disorder.
Patients with such disorders tend to manifest real physical symptoms, such as pain or fatigue, but without any underlying explanation supported by physical, biological or medical reasoning.
Doctors at Children’s Hospital believed Pelletier would benefit from intensive psychological treatment and therapy.
But Pelletier’s parents were resistant to psychotherapy, doctors said, and insisted that their daughter instead suffered from mitochondrial disease, a chronic, very rare and incurable condition characterized by mutated cells.
The diseased cells become unable to completely burn food and oxygen to generate enough energy for a body to live. The condition is often inherited.
During Pelletier’s hospitalization, she and her parents were forbidden from speaking about health issues, physical ailments or anything medical related. Even dandruff and ingrown toenails were off limits. If they ventured there in conversation, the call would end abruptly, Pelletier said.
Pelletier said her constipation worsened while she was hospitalized. Staff would make her sit on the toilet for extended lengths of time, she said. They also wanted her to push herself in her wheelchair, but she felt so weak that she could not. She would be left to sit, unmoved, sometimes for entire days, she said,.
Pelletier said she did not feel encouraged by the staff.
“They were just being mean about it,” she said.
She was scared all the time, missed her family desperately and felt like no one at the hospital believed her.
“I just wanted to go home,” Pelletier said. “It was really hard being away from my family.”
These days, she has discovered horseback-riding therapy. She thrives in the saddle and now rides competitively, and it’s not unusual for her to take winning ribbons home, usually blue and red.
“I love it,” she said during one of the few times her face lit up on the stand.
When Pelletier’s testimony came to an end, her father helped her down from the witness stand.
With his arms hooked under her armpits, Lou Pelletier supported his daughter’s weight as she half-shuffled, half limped across the courtroom back to her empty wheelchair beside her mom.
Travis Andersen of the Globe Staff contributed to this report.