Justina Pelletier’s lawyer on Tuesday painted a perplexing and harrowing picture of complex medical problems Pelletier faced from her very first breaths. Born premature, and having suffered a stroke during or just after birth, her lawyer said, she has been plagued by pain and severe gastrointestinal problems all her life.
But an attorney for Boston Children’s Hospital told a Suffolk Superior Court jury that Pelletier’s parents overmedicalized her care and were “very resistant” to doctors’ suggestions that psychological issues were at the root of her condition and that she needed psychiatric care.
Two starkly different portraits of the 21-year-old Connecticut woman and her parents emerged during opening statements in the Pelletiers’ lawsuit against Children’s and several of its providers, who treated Justina when she was 14.
Her yearlong odyssey at Children’s in 2013 ignited a firestorm about whether medical professionals should override parental rights when there is a dispute over treatment of a complex illness.
Justina landed in a locked psychiatric unit at Children’s, 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.
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 Medical Center..
In court Tuesday, John Martin, a lawyer for the Pelletiers, described Justina’s challenging medical history in what is expected to be at least a monthlong trial, with more than 60 potential witnesses. Justina, in a wheelchair, her parents, and her older sister, Jessica, observed the proceedings all day Tuesday.
Justina’s life, Martin said, has been “one step forward, and two steps back” as she has battled an array of health problems that sometimes have kept her from school, and have sometimes stabilized.
But her health was on a downward trajectory in 2011, he said, when the family brought her to Tufts Medical. There, Justina’s parents, Linda and Louis Pelletier were “shocked and surprised,” Martin said, when doctors wanted to admit Justina and insert a tube in her nose to help hydrate her because she was having difficulty eating and drinking. The Pelletiers balked.
Doctors there then filed an allegation of neglect against the Pelletiers with the Connecticut child protection agency, as a strategy to help the Pelletiers get the psychiatric and home care they needed in Connecticut. The allegations were later dismissed.
Justina continued to be treated at Tufts for mitochondrial disease, a group of rare genetic disorders that affect how cells produce energy. In February 2013, on the advice of Tufts’ doctors, the Pelletiers took their daughter to Children’s to see a specialist.
The Pelletiers’ lawyers told the jury that doctors at Children’s almost immediately suspected her parents of having a psychological disorder called Munchausen syndrome by proxy, or exaggerating — and exacerbating — Justina’s illness.
Within weeks, Justina was removed from her parents and placed in a locked psychiatric wing at Children’s for nine months as her parents battled Children’s to get her back, Martin said.
Today, he said, Justina is being treated by a geneticist from Connecticut for mitochondrial disease and still has severe gastrointestinal problems and pain.
”She has night terrors,” Martin said, adding that his client has to sleep with her mother because “she is terrified of being taken away.” Her overwhelming fear of doctors and overnight hospital stays is “incurable” following her ordeal at Children’s, Martin said.
The Children’s providers 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, a pediatrician and child abuse specialist who has since left Children’s, and is now medical director of the Child Protection Program at Massachusetts General Hospital.
Ellen Epstein Cohen, an attorney for Children’s, said doctors there ran tests and called Justina’s medical providers in Connecticut and at Tufts but could not find “a single unifying” medical reason for why Justina was having trouble walking and was slurring her words.
Cohen told jurors that Justina’s Connecticut and Tufts providers all advised the Children’s team that they strongly suspected psychological issues with Justina, and told them she needed psychiatric care. But her parents, Cohen said, were “very resistant” to this.
All the doctors at Children’s said Justina “would present differently” around her family. When her mother was present she would stop talking and slump in her wheel chair, but when they weren’t there she was much more “interactive” with the doctors, Cohen said.
The first witness called, Paulette Brown, a longtime social worker at the Massachusetts Department of Children and Families, investigated Children’s claim of medical child abuse against the Pelletiers. Brown said she didn’t remember reviewing many medical records at that time, and gleaned much of her information from what the doctors at Children’s told her.
Brown is expected back on the stand Wednesday.