…the court-ordered release of Justina Pelletier, a 15 year old girl, from Boston Children’s Hospital (BCH), where she has been hospitalized for almost a full year against her parents wishes. Justina had been treated for a mitochondrial disease at Tufts Hospital, but BCH disputed the diagnosis.
Justina’s case illustrates some of the problems of diagnosing and treating mitochondrial diseases,
This is a huge problem for those of us with an invisible illness, especially if we seek treatment for pain whose cause is still unknown. If the pain cannot be seen, we are assumed to be “faking it” or “drug seeking”.
First, her symptoms were variable. Her parents took her to multiple physicians seeking a diagnosis and effective treatment plan.
BCH physicians not only reportedly disputed the diagnosis of mitochondrial disease, insisting she had a psychiatric problem, but did not allow either Dr. Korson or Dr. Flores to participate in Justina’s care, nor even to provide a second opinion.
Seeking multiple opinions was disparaged as “doctor shopping,” prompting concerns of Munchausen’s syndrome, or factitious illness (in this case created by the parents). Because of concerns over “medical child abuse,” Justina was put under the care of protective services and placed in a psychiatric unit, allowed only very limited contact with her family, and subjected to life in a very strict and regimented setting. Some of her medications were stopped. After a protracted battle, a court ordered Justina to be released from BCH and returned direction of her care to Dr. Korson.