In February 2013, Pelletier – the daughter of Linda and Lou Pelletier of West Hartford, Connecticut –was admitted to Boston Children's Hospital after being treated by Tufts Medical Center for mitochondrial disease for years. That decision, made because Pelletier's longtime gastroenterologist had moved to Boston Children's Hospital, would set off a fight that made national news.
When the Pelletiers moved Justina's treatment to the children's hospital, doctors there took her off of medication for mitochondrial disease and diagnosed her with psychiatric problems. When her parents objected, the hospital brought in the Massachusetts Department of Children and Families. The hospital was concerned Pelletier's parents were harming their child by having her on the wrong medications and by interfering with treatment.
Mitochondrial disease is a rare disorder where the body’s cells cannot produce energy, creating chronic fatigue and problems with digestion. It can affect any organ in the body, and is both poorly understood and difficult to diagnose. Testing had not definitively shown that Pelletier had the illness.
DCF promptly stood with the hospital, essentially accusing her parents of abuse for mistreating her illness. The hospital, which receives some of the medically toughest cases in the country, has faced five such cases in less than two years where custody was either taken away or threatened.
According to The Boston Globe, the Department of Children and Families often stands with the Boston Children's Hospital on complex cases like Pelletier's, given the hospital's top-level expertise in the medical field. Other hospitals around the country have faced similar circumstances.
Since the hospital's decision to bring in the department, her parents have unsuccessfully sued for custody. A judge eventually ruled in favor of keeping Pelletier under the care of the state.
Last week, however, a department spokesperson said its goal is “to ultimately move Justina back to her home state of Connecticut,” and indicated this might happen. Her treatment is being changed back to Tufts. However, it does not appear she would be under the custody of her parents.
According to Personhood USA staff writer Josh Craddock, Pelletier's situation has brought together a coalition that “want[s] to see Justina released back to her family so she can receive the proper care and therapy she needs.” Craddock says several dozen attendees have been part of a recent prayer vigil to get her released to her parents. Over 25,000 people have joined a petition and a Facebook page in support of Pelletier's parents, and over 1,000 phone calls, letters, and e-mails have gone to Judge Joseph Johnston and the Massachusetts State Assembly.
The department's decision is sharply different than the one Johnston made last month, when Pelletier was kept in the facility she has been in since January. That facility, Wayside Youth and Family Support Network, has seen protests and pressure from several national Christian groups. Before residing at Wayside, Pelletier was kept in a psych ward for almost a year.
Pelletier, who was an ice skater only weeks before symptoms worsened a year ago – which led to her parents going to Boston Children's Hospital – is in a wheelchair, says Craddock. “She hasn't been provided any means of education, and her health is rapidly deteriorating.”
The family has been allowed weekly supervised visits, even while the custody fight has continued. The family says Dr. Mark Korson, chief of metabolism at Tufts University, is an advocate for their daughter. Korson is also treating Pelletier's older sister for mitochondrial disease.
Justina's father had been faced with a contempt-of-court complaint by the Department of Children and Families for speaking to various media outlets in violation of a gag order instituted by Johnston. That gag order has now been lifted.
A custody hearing is set for March 17.
A public affairs spokesperson for Boston Children's Hospital did not respond to multiple requests for comment by press time. The spokesperson did say the hospital was unable to give more detail than what had already been reported, due to HIPAA regulations, but had agreed to provide a statement to LifeSiteNews.