A legal battle in New England is pitting a family against the Boston Children’s Hospital and the state of Massachusetts.
Several years ago, 15-year-old Justina Pelletier was diagnosed with mitochondrial disease – a rare genetic condition with a huge variety of symptoms ranging from loss of muscle coordination to learning disabilities. Justina’s 25-year-old sister Jessica has been diagnosed with the condition as well.
In February 2013, Justina caught the flu. For people with mitochondrial disease, the symptoms of illnesses are amplified. While the flu makes everyone who catches it feel terrible, it’s a full-fledged medical emergency for someone with mitochondrial disease. Accordingly, Justina’s family checked her into the Boston Children’s Hospital (BCH) to be monitored as her body fought off the virus.
After three days in the hospital, the medical team at Boston Children’s Hospital told Justina’s family some strange and unexpected news. Doctors believed all of Justina’s ailments – both the flu and her mitochondrial disease – were not legitimate physical illnesses. They believed her symptoms were psychosomatic.
Psychosomatic illness is defined as a sickness having physical symptoms but originating from mental causes. Despite an official mitochondrial disease diagnosis from Tufts Medical Center, the crew at BCH believed Justina’s ailments were mental in nature.
Justina’s family was understandably confused by the BCH team’s diagnosis. They decided they wanted to check Justina out of BCH and take her over to Tufts Medical Center, where she’d been treated for years for her mitochondrial disease. The doctors at BCH had other plans.
When the Pelletiers went to discharge Justina, they were told they wouldn’t be allowed to do so. BCH had filed a complaint with the Massachusetts Department of Children and Families saying it suspected the Pelletiers of both child abuse and subjecting Justina to invasive treatments while denying her mental health help.
Today, one year later, Justina remains in the custody of the state of Massachusetts. Justina spent most of last year in a psychiatric ward and now lives in a residential treatment center. State medical officials have prescribed her mental health treatments and discontinued her mitochondrial treatments. The decision stems from their unwavering belief that Justina’s ailments are psychosomatic.
Prior to contracting the flu last year, Justina was an active teenager. Now, having gone a year without mitochondrial treatment, she is wasting away.
“She is going off a cliff,” father Lou Pelletier said. “She looks awful and is pale and her hair is falling out. Her gums are receding and she has no body strength.”
The Pelletiers are locked in a legal battle for their daughter. Massachusetts maintains custody of Justina and does not look to have any intentions of giving her up. The family wants to regain custody of their daughter and admit her to Tufts to resume her past medical treatments.
To help the Pelletiers do so, the Coalition for Diagnostic Rights filed a complaint against the Massachusetts Department of Children and Families accusing them of “medical child neglect and medical child abuse for failure to provide medical care” to Justina.
"Doctors are absurdly reckless when they exclude a medical investigation in favor of a vague somatoform diagnosis," a representative from the coalition said. "It's always a guess. This is a battleground where doctors and patients are fighting for authority."
Pelletier told ABC News that Justina’s doctor from Tufts has given them his emphatic support in their fight.
“He’s been crying on the phone with us,” Pelletier said.
While Pelletier acknowledges he is fighting an uphill battle – he recently referred to the situation as “fighting two goliaths” – he insists his family will do whatever it takes to regain custody of Justina.
“I have got to save my daughter’s life,” he said. “The system has failed. I am battling the medical world that thinks it knows everything.”