Advocates Fight for Justina Pelletier, Teen Held by State in Psych Ward

Feb. 10, 2014— -- One day Justina Pelletier was a seemingly healthy teenager performing jumps and spirals at a skating show and six weeks later, on Feb. 10, 2013, she was in the emergency room at Children's Hospital in Boston after a severe bout with the flu, refusing to eat and barely able to walk.

Her parents, Lou and Linda Pelletier of West Hartford, Conn., say their daughter was diagnosed and being treated at Tufts Medical Center for mitochondrial disease, a rare genetic disorder with physical symptoms that can affect every part of the body. Justina's sister Jessica, 25, is also being treated for the disease.

But three days later, a team of doctors at Boston Children's said her symptoms were psychosomatic, according to the family. The hospital then filed a complaint with the Massachusetts Department of Children and Families, as required by law, because they suspected the parents of child abuse for subjecting their daughter to invasive medical treatments and denying her mental health therapy.

They laid out a treatment plan for Justina, which her parents refused to sign, and on Feb. 14, 2013, when they attempted to check their daughter out of Boston Children's to take her back to Tufts to resume medical treatment, the family said they were told by Boston Children's that they could not discharge Justina.

"We never got anything in writing," said Lou Pelletier, a financial planner and father of four girls. "While all the security guards were showing up, we actually called 911 and said our daughter had been kidnapped by Boston Children's Hospital."

Pelletier said three detectives spoke to the family, then they were brought into a room and the medical team told them the hospital had contacted the DCF and under a "51A," the section of Massachusetts law that mandates health officials and others to report suspected child abuse, and "they were taking custody of our daughter."

"We didn't even get a chance to say goodbye," he told ABCNews.com.

Pelletier said his family gave its statement to the state regarding allegations of child abuse in a legally mandated hearing within 72 hours of the state taking custody, but that the court process "took until April."

For the last year, the 15-year-old has been in state custody under court-ordered treatment in a complex medical case that has pitted those involved in her care against her family and enraged advocates.

Justina was diagnosed with somatoform pain disorder, a psychiatric condition when a person experiences physical pain for which no known medical explanation can be found, according to her family. The case highlights a growing concern among those with rare diseases and autoimmune disorders that physical symptoms that cannot be explained will be dismissed by doctors as psychosomatic.

Lou Pelletier said he and his wife have been only allowed to see their daughter on one-hour weekly supervised visits, first while she was in therapy at Boston Children's psychiatric ward Bader 5, then at a residential treatment center where Justina is now living in Framingham, Mass. They say her condition has deteriorated because the hospital has stopped all medical treatment for mitochondrial disease.

"She is going off a cliff," Pelletier said of his daughter, who is now confined to a wheelchair. "She looks awful and is pale and her hair is falling out. Her gums are receding and she has no body strength."

He said that until the gag order was in place, Justina was "sneaking notes" to the family saying that she is in permanent pain.

Justina's case made headlines last year in New England, triggering a debate over somatic illnesses –- whether they are true medical issues or not and how they are treated. It also raises concerns about parental rights in choices of medical treatment and the lack of transparency in cases of alleged medical child abuse.

On Dec. 20, 2013, the court ruled the hospital should continue to retain custody, but appointed an independent investigator to take a new look at the case and a second guardian "ad litem" to legally represent the best interests of the girl, according to the Boston Globe, which did a two-part series on her case.

In the latest development, the Pelletiers have appealed to the state for custody, alleging "abuse of power." The court heard the case in January and again on Feb. 4, but postponed its decision until Feb. 13.

Because juvenile court records are confidential and Judge Joseph Johnston placed a gag order on all involved in the appeal, Justina's doctors and her caregivers have been unable to talk about the case, and it is unclear whether the teen is suffering from a physical illness or has psychiatric problems or both.

But Lou Pelletier broke his silence recently, telling ABCNews.com, "I have got to save my daughter's life."

"The system has failed," he said. "I am battling the medical world that thinks it knows everything."

The Massachusetts Department of Children and Families told ABCNews.com in an email that it "does not comment or provide any information regarding children in our custody," and also cited the court order.

Boston Children's Hospital said in a prepared statement to ABCNews.com that they "acknowledge the tremendous efforts of our staff in caring for this patient. We are proud of their work and positive impact on the patient."

"[O]ur clinicians are particularly distressed that the inaccuracies surrounding this case have caused undo concern for the many children and their families with mitochondrial disorders in our care," the statement added. "Misleading reports suggesting that the hospital holds patients in its inpatient psychiatric unit do not recognize the role of DCF as the legal guardian or the challenges inherent in finding appropriate lower acuity facilities for certain patients. In all cases, transfer to a less restrictive setting occurs as soon as an appropriate placement setting becomes available. Patient privacy prevents the hospital from commenting further."

Justina's ordeal began in 2010, when she had severe cramps because of a stomach blockage, according to her father. Doctors at Connecticut Children's Hospital unsuccessfully tried to "flush" her lower intestinal tract and subsequently did exploratory surgery, he said. Doctors found a congenital band, about 20 inches of cartilage wrapped around her colon and removed that and the girl's appendix, he said.

In 2011, when her condition did not improve, he said doctors referred Justina to Dr. Alejandro F. Flores, a gastroenterologist at Tufts.

In 2012, surgeons considered removing Justina's colon but eventually performed a cecostomy, attaching a device to the colon that clears the bowels of fecal matter.