A Connecticut 15-year-old has for months been held prisoner at Boston Children’s Hospital (BCH) against the wishes of her parents, who lost custody because of a bizarre misdiagnosis.
Years ago, Justina Pelletier was diagnosed with mitochondrial disease, a genetic disorder that affects muscle tissue and can cause loss of coordination. She has continued to lead an active, normal life, however. She even figure skates.
But nine months ago, Pelletier came down with the flu and was hospitalized at BCH. It was there that Boston doctors told her that she had been misdiagnosed by her regular doctors at Tufts Medical Center, and was actually suffering from somatoform disorder, a mental illness.
What happened next was unbelievable.
“They came in, and they said we cannot take Justina out of the hospital,” said Linda Pelletier, Justina’s mother, in a statement to FOX-CT news.
The parents were escorted out of the hospital by armed security guards, and told that they could no longer have contact with Justina except for one hour, once per week.
Next, the hospital called Connecticut’s Department of Children and Families. Four days later, the parents lost custody of Justina.
“It’s beyond any wildest nightmare that you could think of,” said Lou Pelletier, Justina’s father, in a statement.
BCH would not comment on the situation, but it seems clear based on documents obtained by local news channels that Boston doctors believe Justina’s parents endangered her by pursuing medical care consistent with the original diagnosis — the one that Justina’s previous doctors all say was correct.
“Due to concerns regarding Justina’s regressive behavior changes around her family, the multiple medical procedures and care episodes she has been through … and both parents’ resistance towards recommended treatment plans for Justina … a child protection team was convened,” according to a BCH report.
Clinical psychologist Dean Hokanson, who has treated Justina for years, took note of the irony.
“They were actually being accused of being too active in pursuing health-care matters for their child,” he said.
Hokanson has testified in court that the parents always did exactly what doctors recommended until the somatoform diagnosis.
Dr. Mark Korson, Justina’s doctor at Tufts, has not publicly commented on the matter, but did write an email to the parents in which he detailed his frustration with BCH doctors.
“I am dismayed. … It feels like Justina’s treatment team is out to prove the diagnosis at all costs. … The team has demanded that Justina be removed from the home. … This represents the most severe and intrusive intervention a patient can undergo … for a clinical hunch,” wrote Korson.
The Pelletiers are currently fighting to regain custody of their daughter. Their next day in court is Dec. 5.
In the meantime, it is their view that the hospital has kidnapped their daughter.
Boston Children’s Hospital is affiliated with Harvard Medical School. Its administrators did not immediately respond to a request for comment.