Can you imagine bringing your child to an esteemed children’s hospital for care and medical treatment, only to have your child taken away from you and placed into state custody? Well, that was and is the reality of Justina Pelletier’s parents, Lou and Linda Pelletier of Connecticut.
The Pelletiers have been fighting for a year for their daughter, Justina, who they say suffers from mitochondrial disease (a rare genetic disorder with physical symptoms that can affect the entire body). First Justina was treated at Tufts Medical Center, then she was transferred to Boston Children’s Hospital. Doctors at Tuft’s Medical Center diagnosed her with mitochondrial disorder, but doctors at Boston Children’s Hospital say Justina’s symptoms were psychosomatic and did not result from mitochondrial disease.
Since the Pelletiers agreed with the diagnosis given by Tufts, they asked Children’s Hospital to treat their daughter medically. When Children’s refused, proposing psychiatric treatment instead, the Pelletiers advocated for their 15-year-old daughter as any loving parents would do. Instead of respecting their parental authority, however, Boston Children’s Hospital reported the Pelletiers to the Massachusetts Department of Children and Families (DCF) in February of 2013 for suspected child abuse, namely by denying her mental health therapy and subjecting her to invasive medical treatments for mitochondrial disorder. The Pelletiers refused to sign a proposed treatment plan for Justina, believing it to be the wrong course of treatment for their daughter.
The result? The Pelletiers were blocked from removing Justina from the Children’s Hospital. They were also blocked from having any say in her care and medical treatment. Justina was placed in a psychiatric ward at Children’s Hospital first and then in a residential treatment center. The Pelletiers are only allowed to see their daughter Justina for one-hour, supervised, each week. Since fall 2013 there has been a gag order on the case.
Slowly but surely, positive strides are being made for the Pelletiers. DCF brought the matter to court, and late last week they finally issued a statement announcing plans to return Justina to her home state of Connecticut. However, it is still unknown whether or not custody will be returned to her parents. No time frame has been set for her return, and the family only remains cautiously optimistic. In another small victory on Monday, a family court judge lifted the gag order on the case and ordered that Justina will now be treated by her original doctors at Tufts.
This heartbreaking and troublesome case raises a host of legal issues, including child custody and guardianship laws. And as the custody battle continues, with a court hearing scheduled March 17th to determine guardianship, Justina is without her parents and her sisters, deteriorating in the presence of strangers who think they know best.