Two strikingly different accounts of Justina Pelletier’s health during her 2013 stay in a locked psychiatric ward at Boston Children’s Hospital emerged in Suffolk Superior Court Monday.
A lawyer for the hospital asserted that Pelletier, then 14, was able at times to stand on her own to bake cookies. The lawyer said she also learned to move her own wheelchair and master other physical tasks without constant help.
But the young woman’s father, Louis Pelletier, insisted on the witness stand that it was clear to anyone who saw his daughter during that stay: Her health had been “declining.”
The Pelletiers are suing Children’s and several of its providers, alleging they ignored the advice of her doctors at Tufts Medical Center, who were treating her for mitochondrial disease, a rare disorder that affects the way cells produce energy. The Children’s team concluded her problems were largely psychiatric, fueled by her parents.
Her one-year stay at Children’s Hospital in 2013 ignited a firestorm about whether medical professionals should override parental rights when there is a dispute over treatment of a complex illness.
Monday’s testimony offered such contrasting portraits of Justina Pelletier at the time that it was sometimes hard to imagine the two sides were describing the same patient.
She was “bright, smiling, and laughing while in conversations” during her stay in the unit, hospital attorney Ellen Epstein Cohen, said.
“Were you aware that Justina was making progress?” Cohen said.
“She was declining,” Louis Pelletier shot back.
“So she appeared to you as her father to be declining?” Cohen said.
“To anyone in the room,” Pelletier said.
The testimony included graphic descriptions of the teenager’s life and complex medical conditions, from bowel and possible gynecological problems to psychiatric concerns, as the trial of her family’s malpractice lawsuit against the hospital entered its third week. All the while, Justina Pelletier, now 21, has listened from her wheelchair in the courtroom, at times bowing her head.
Louis Pelletier’s second day on the stand Monday was punctuated by some testy exchanges, as Cohen, the hospital’s attorney, read from transcripts that detailed phone conversations her parents had with her while she was locked in the psychiatric ward. The family’s interactions with the teen were monitored by state social workers because the state’s child protective agency was awarded custody of the teen, after hospital staff reported she was at risk of harm from too many medical procedures sought by her parents.
Cohen asked Louis Pelletier if he remembered advice he gave his teen during one phone conversation.
“Your family is the only one to trust. . . .Don’t trust the weirdos at the hospital," Pelletier allegedly told his daughter, according to Cohen.
Pelletier said he couldn’t recall saying that.
The Pelletiers had rushed their daughter to Children’s from their Connecticut home in February 2013 because of severe abdominal pain. Just weeks earlier, she was ice-skating and attending school, but by the time she arrived at Children’s she was having trouble walking and eating and was slurring her words.
The Pelletiers contend their daughter’s health spiraled downward, and she was emotionally scarred, as the Children’s team and social workers from the state Department of Children and Families oversaw her care and granted the family limited visitation and phone calls.
But Cohen, the Children’s lawyer, reading from the hospital’s records, said the teen, during her months in the psychiatric unit, gained the strength to wash her own hair and eat regular meals instead of depending on a feeding tube. She was also, Cohen said, having regular bowel movements — something her parents had insisted was not possible without using a tube that was inserted in her intestines for a solution to force her colon to contract and flush her system.
Cohen also noted that the teen had a court-appointed lawyer while at Children’s to help her if she felt she was being mistreated. But the Pelletiers’ lawyer, John Martin, indicated the teen was unlikely to reach out to that lawyer, and asked her father to explain.
“Sometimes, unfortunately, it’s very difficult for Justina to articulate what she is trying to get across,” Lou Pelletier said. “If she is not comfortable with someone, it can be difficult.”
A court returned care of Justina Pelletier to her parents in June 2014, and since then she has had multiple medical procedures at several hospitals at her parents’ urging, including the removal of her colon, according to the Children’s attorney and court records.
The family is still seeking out experts over concerns about possible spinal problems that might explain why Justina Pelletier is not walking, despite repeated spinal scans that do not reveal an obvious problem, the Children’s lawyer noted.
“We are trying to be an advocate for our daughter,” Lou Pelletier said.