A juvenile court judge in Boston ruled today that the state will retain custody of 15-year-old Justina Pelletier for the time being, but also appointed an independent investigator to take a new look at her case.
The decision extends the legal and medical saga involving Pelletier, who has spent the past 10 months at Boston Children’s Hospital, most of it in a locked psychiatric ward.
Her case centered on a controversial concept, “medical child abuse,” and showed the high-pitched emotions that can erupt when parents’ rights to determine their children’s medical care clash with the state’s responsibility to protect vulnerable children.
“I don’t understand how they can do this. I didn’t do anything wrong,” her mother, Linda Pelletier, said as she left the courtroom, sobbing.
Her red-faced father, Lou, said, “It’s a [expletive] corrupt state” as he left.
Judge Joseph Johnston slated another hearing for Jan. 10 and appointed a new guardian ad litem — who is required under state law to take an “objective and even-handed” look at the facts in the case.
The judge is also exploring the possibility of allowing Justina to eventually return to her home in West Hartford, Conn., while asking the Connecticut child protection agency to monitor the parents’ compliance with a strict set of rules about her care.
As detailed in a two-part Boston Globe series earlier this week, Justina was rushed to the emergency room of Boston Children’s Hospital in early February by her mother, who complained her daughter was suffering severe symptoms from a rare metabolic disorder. The girl, who six weeks earlier performed at a skating show, was on that winter day barely able to walk and had virtually stopped eating.
Within three days, doctors at Children’s concluded that her parents had wrongfully been subjecting the girl to invasive treatments for mitochondrial disorder and were blocking psychiatric care that she badly needed. The clinicians at Children’s said the girl suffered primarily from somatoform disorder, in which psychosomatic symptoms are real, but there is no underlying cause.
When the parents threatened to discharge Justina from Children’s and take her to see her doctor at Tufts Medical Center, the hospital reported to the state its suspicions of medical child abuse, which prompted the state’s child protection agency to take emergency custody. Justina’s case was one of a handful of similar cases involving Children’s where a disputed diagnosis led to parents losing custody or being threatened with that measure.
The parents accused the hospital and the Massachusetts Department of Children and Families of virtually kidnapping their daughter, and ignoring the medical advice of Dr. Mark Korson, the chief of metabolism at Tufts Medical Center, who had given Justina a working diagnosis of mitochondrial disorder over the past year.
Children’s and the state agency have declined to comment specifically on Justina’s case, citing patient confidentiality. The Globe, however, obtained records showing that they believed the girl was getting a series of needless medications and treatments, and that the parents, Lou and Linda Pelletier, were blind to her severe psychiatric needs. The parents had a pattern of combative behavior with staff when they were displeased, records show. They had been investigated once before by the Connecticut child welfare agency for allegations related to Justina’s medical treatment. That case was ultimately dismissed.
It remains unclear exactly who is responsible for Justina’s prolonged stay at Bader 5, the psychiatric ward at Children’s where bed space is typically in high demand. Children’s officials have indicated that, once a patient is medically stable, they move for discharge, but cannot do so if the legal custodian — in this case, the state— does not identify a safe location for the patient to go. The state, meanwhile, has apparently struggled since the summer to find a suitable residential center or foster home for Justina.