In February 2013, Linda and Lou Pelletier brought their daughter, Justina, to Boston Children’s Hospital. She was unable to walk, but, as it has turned out that was the least of her problems.
For years Justina had been diagnosed mitochondrial disease, a relatively newly discovered disease, causing muscle pain and weakness.
But her condition was made worse when she caught the flu in February.
So at the recommendation of her doctor at Tufts Medical Center, Mark Korson, she was admitted to Boston Children’s Hospital to see her gastro-intestinal specialist, Dr. Alex Flores, who had transferred from Tufts to BCH.
When she arrived a Boston Children’s a new set of doctors made a completely different diagnosis. They concluded that Justina was suffering from a psychiatric disorder. Needless to say, the parents were underwhelmed by that opinion and attempted to remove their daughter from the hospital.
This is where the caring medical professionals of Boston Children’s stepped in and had the parents charged with child abuse.
The Department of Children and Families took emergency custody of the teen on Valentine’s Day 2013 after a diagnostic dispute arose between some doctors at Tufts Medical Center and Boston Children’s Hospital over the causes of her medical problems, including difficulty eating and walking.
Tufts doctors had been treating Pelletier for mitochondrial disease, a group of rare genetic disorders affecting cellular energy production, but physicians at Children’s concluded that her symptoms were largely psychiatric in origin. Her parents rejected the new diagnosis, and when they tried to move the girl back to Tufts, the Children’s team notified the state that it suspected the parents of medical child abuse.
Pelletier remained at Children’s for almost a year, most of the time in a locked psychiatric ward. Johnston wrote that the girl was ready to leave the hospital in June 2013 but could not be discharged because Massachusetts child-protection officials’ efforts to find a suitable placement “were significantly hampered by the parents.”
The specific allegation was that the parents were guilty of “medical child abuse” because they were insisting that their daughter get actual medical care rather than being locked in the psychiatric ward.
Pediatrician Carole Jenny and her psychiatrist husband coined the term “medical child abuse” some time ago, but it has taken hold in the medical world just in the last few years. It has become a controversial catch-all for a wide spectrum of cases in which health care providers deem parents acting against the best interests of their child in a medical setting.
Many such parents used to be diagnosed with Munchausen by Proxy, a psychiatric condition in which they seek attention from the medical community by exaggerating, fabricating or even inducing a child’s illness. The new term avoids references to parental motivation.
Noted child-protection specialists say signs of medical child abuse, whatever the motivation of the perpetrator, must be taken seriously.
“If the parent won’t work with you, and you really think the child is suffering, you’ve got to act,” said Jenny, who until recently ran the child protection team at Hasbro Children’s Hospital in Providence.
Still, allegations of suspected medical child abuse become far murkier when the parents’ assessment of the child is backed by reputable physicians at different hospitals. Some child-protection doctors, whose field has recently been elevated to a board-certified specialty, are beginning to draw criticism — even from some unlikely quarters.
Long story short, Justina was remanded to the Massachusetts Department of Children and Families. The parents have understandably been uncooperative in working with DCF for a simple reason, their child should never have been removed from their care. The case went to court. A Massachusetts juvenile court judge named Joseph Johnston is overseeing the case. One of his first actions was to slap the Pelletiers with a gag order forbidding them to speak out about their own daughter’s plight. He has since capped that high-handedness off by awarding permanent custody of Justine to the DCF who has placed her in a psychiatric facility.
This is just incredible.
A child is sick. The parents get medical care. Doctors disagree with the diagnosis. Child is removed from the parents’ custody. The judge imposes a gag order on the parents. The judge chastises the parents for being “difficult.” The parents are stripped of custody of their child and she is remanded to a psychiatric clinic where she will remain until she is 18 and deprived of visits to their child.
In a just world, the physicians at Boston Children’s responsible for this, Judge Johnston, and the little Eichmanns of DCF would be horsewhipped through the streets of Boston. Just world or no, a child should not be legally removed from the custody of the parents because two sets of doctors can’t agree.