At 11:37 a.m., a loud outburst came from inside Courtroom 6. Justina Pelletier’s father then appeared at the door and yelled “Evil!” into the crowded hallway. A few minutes later, her mother emerged, sobbing, “I don’t understand how they can do this. I didn’t do anything wrong.”
Linda and Lou Pelletier of West Hartford, Conn., went into juvenile court in Boston on Friday hoping a judge would return custody of their 15-year-old daughter to them. Justina’s life has been in limbo for more than 10 months, as the teenager has remained in state custody at Boston Children’s Hospital, mostly in a locked psychiatric ward, while her parents, doctors, and lawyers fought over her future.
Instead, Judge Joseph Johnston ruled the state should maintain custody of Justina, at least for now. He did, however, say he would appoint a court investigator to take a fresh look at the case, and he signaled a willingness to explore returning Justina to her home as long as Connecticut authorities closely monitor her care, according to two sources who were briefed on the decision at the closed hearing. The judge, who also continued his gag order on all parties to the case, set the next hearing for Jan. 10.
The family’s saga sprang from a diagnostic dispute between Justina’s doctors at Tufts Medical Center and at Children’s over whether the child’s deteriorating condition was primarily a physical or a psychiatric problem.
The focus of the case swiftly turned to a controversial concept called “medical child abuse,” which is being increasingly applied to parents suspected of interfering with their child’s medical care or pushing for unnecessary and even harmful treatments.
The case shows the profound challenges all the parties face in sorting out the truth behind medical child abuse allegations, and how raw the emotions can get when parents’ right to determine their child’s medical care clashes with the state’s responsibility to protect children from harm.
“They are all in a difficult spot looking at a difficult set of facts, and having to make difficult decisions,” said Dr. Stephen Boos, a child abuse specialist at Baystate Medical Center who is not involved in Justina’s case.
As detailed in a two-part Boston Globe series this week, Justina was rushed to the Children’s emergency room in early February by her mother. Linda had complained that her daughter was suffering severe symptoms from mitochondrial disease, a group of rare genetic disorders that affect how cells produce energy, often causing problems with the gut, brain, muscles, and heart.
Dr. Mark Korson, the chief of metabolism at Tufts, had been treating Justina for that disorder for more than a year and had sent her to Children’s only because her Tufts gastroenterologist had recently moved there. The girl, who six weeks earlier had performed in an ice show, was barely able to walk and had virtually stopped eating.
But within three days, doctors at Children’s disputed that mitochondrial disease was the primary cause of her symptoms and began to suspect that her parents were blocking psychiatric care that she badly needed. The clinicians at Children’s decided that the girl suffered primarily from somatoform disorder, in which symptoms are real but there is no underlying physical cause. The parents complained that the Children’s team was dramatically changing Justina’s course of treatment without Korson’s involvement or even an examination by the gastroenterologist they had come to see.
When the parents threatened to take Justina from Children’s to see Korson, the hospital reported its suspicions of medical child abuse to the state. That prompted the state’s child protection agency to take emergency custody.
Korson asked repeatedly for a roundtable meeting bringing together all of Justina’s key doctors and others who knew her best, as a way to devise a unified plan to present to her parents. This approach is widely advocated by child abuse specialists across the nation in highly contentious cases like this one. However, Korson’s requests went unanswered.
The battle over Justina’s future was one of five cases involving Children’s in the last 18 months where a disputed diagnosis led to parents losing custody or being threatened with that extreme step. These conflicts, which typically involve controversial diagnoses at the medical frontier, have exposed the consequences of the ongoing failure to upgrade medical expertise within the state’s Department of Children and Families. The agency, many observers believe, is simply not equipped to properly referee such cases.
Children’s, Tufts, and the state child-protection agency have declined to comment specifically on Justina’s case, citing patient confidentiality. The Globe, however, obtained records showing that Children’s staff and ultimately state officials believed that the girl was getting a series of needless medications and treatments rather than the mental health care she needed.
‘I don’t understand how they can do this. I didn’t do anything wrong.’Linda Pelletier, ailing girl’s mother
Both Children’s and the state noted in records that the parents had a pattern of combative behavior with staff.
It remains unclear why Justina is still at Bader 5, the psychiatric ward at Children’s. The hospital released a statement Friday saying that in general, it “does not keep patients in its care against the direction of the custodial guardian.” The state, Justina’s legal guardian, has apparently struggled since the summer to find a suitable residential center or foster home that would agree to take on Justina’s complex case.
Children’s added in its statement, “We make every effort to treat patients and families involved in these cases with compassion and respect, while focusing on the medical needs of the child involved.”
After Friday’s intense but brief hearing, Linda and Lou Pelletier and two of their four daughters huddled in the lobby of the Edward Brooke Courthouse, wearing expressions that alternated between despair and outrage, before walking out the front entrance. Their lawyer, Chester Tennyson, trailed them, clutching his briefcase and looking grim.Neil Swidey can be reached at email@example.com. Patricia Wen can be reached at firstname.lastname@example.org. Follow Swidey @neilswidey and Wen @globepatty.