On Valentine’s Day 2013, Justina Pelletier’s parents were escorted from Boston Children’s Hospital and told not to return. The state took custody of their 14-year-old daughter and held her in a psychiatric unit.
“It was like a punch in the stomach,” Lou Pelletier recalled Friday as he testified in the family’s medical malpractice suit against the hospital and his daughter’s caregivers.
He and his wife, Linda, were made to feel that “we were the ones who were causing her medical issues and we needed to be separated," he told jurors in Suffolk Superior Court.
“We had done nothing of any such nature,” he said. “We were accused of it, and we were fighting for our daughter’s life.”
That night, the Pelletiers met with a lawyer, he said.
They also allege that her four caregivers were negligent when they ignored plans put in place by her former doctors at Tufts Medical Center. Those doctors had diagnosed her with mitochondrial disease. Doctors at Boston Children’s diagnosed her problems as psychiatric.
The standoff over her care drew intense media attention and sparked a debate over when doctors can override parental rights in treatment decision.
In May, Justina Pelletier will turn 22 and graduate from high school. She was born premature and suffered a stroke soon after, leading to a range of developmental and medical issues.
On Friday, Lou Pelletier said that the blowup at the hospital was not over her doctors’ new and restrictive treatment plan, but rather their refusal to include two of his daughter’s longtime physicians, a gastroenterologist and metabolic specialist.
“They were the two most important physicians in Justina’s life at the time and knew her best,” he said. “I just felt this was unbelievable — the team we trusted and relied on, their expertise was going to be eliminated.”
He said his wife was devoted to their daughter’s care, always by her side, persistent about figuring out diagnoses, treatment, and care. She had, over the years, acquired significant medical knowledge about her daughter’s condition. Those were qualities he loved about his wife, not worrisome attributes, he told jurors.
Earlier this week, Justina Pelletier told the jury she continues to have night terrors about the nine months she spent in the locked psychiatric unit. Her separation anxiety remains so intense that she still sleeps with her mother.
Her physical health, however, has improved since she had her colon removed in February 2018, she testified.
“I don’t have any pain anymore,” Pelletier said.
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.
But the Pelletiers became locked in constant dispute with doctors and other caregivers at the hospital over their daughter’s diagnosis and treatment. The hospital’s treatment plan for Justina Pelletier was to focus on her recovery and rehabilitation rather than fixate on diagnoses, symptoms and cures.
Because the symptoms she complained of could not be explained medically, Children’s Hospital doctors began to suspect a psychological component that was perhaps exacerbated by her mother’s overbearing and controlling tendencies, medical records show.
Doctors and state child welfare officials concluded her parents were acting against her best interests and interfering in her treatment.
“The mom needs to return to her role as mother and not medical caretaker or health provider or advocate,” one report said. “It would be beneficial to Justina for mom not to be part of the day or treatment.”
As their relations with the hospital broke down, Lou Pelletier said, he became increasingly distrustful of the doctors.
“It was their way or no way,” he testified.
The doctors, he said, were becoming more hostile toward him and his wife. An e-mail shown to jurors from Boston Children’s Hospital psychiatrist Colleen Ryan to a social worker seemed to support his perception. Ryan, a provider named in the lawsuit, wrote that she was concerned about the Pelletiers “touching her so much,” their negative comments, and whether they would comply with doctors’ wishes not to discuss their daughter’s symptoms in her presence.
“They are evil,” Ryan wrote.
In other e-mails, Ryan wrote, “Reality thinking is not intact and we are headed towards a lawsuit with this family."
“I’m a sliver away from banning them from the facility,” she wrote.
Doctors believed the child would benefit from intensive psychological treatment and therapy. But her father resisted, saying he didn’t believe in “psychological baloney,” records show.
The parents insisted their daughter suffered from mitochondrial disease, like one of her older sisters. The condition is often inherited.
On cross-examination, a lawyer for the hospital pressed Lou Pelletier on angry comments, name-calling, and threats he made to his daughter’s caregivers. The couple had done this time and again, she said.
At Connecticut Children’s Hospital, “you didn’t think they knew what they were doing, right?” she asked. “You felt Justina would die if you left her there, right?”
Pelletier conceded both times.