A Child Custody Case: Is it Mitochondrial Disorder or Medical Child Abuse?

Justina Pelletier, a Connecticut teenager caught in the middle of a year-long custody battle between her parents and the Massachusetts child-protection agency, won a minor victory on Friday when the Massachusetts Department of Children and Families (DCF) announced plans to return 15-year-old Justina Pelletier back to her home state of Connecticut.

This came as the result of heightened media attention triggering 16 state legislators to draft a resolution in an attempt to strip Justina's custodial rights from the Massachusetts DCF.

According to Keith Mason, President of Personhood USA and advocate for the Pelletier family, "This is a situation where a young woman's dignity isn't being respected and she's being treated as a piece of property."

The family has received an outpouring of national support after Lou Pelletier, father of Justina, broke a gag order and exposed the case on national television. He made his first televised appearance on Fox News Channel's "The Kelly File" on Feb. 20, 2014.

Another group led by Rev. Patrick J. Mahoney, director of Charity Defense Organizations, held a prayer vigil Saturday outside the Framingham facility, with family, friends and advocates of Justina's cause as part of a national campaign to "Free Justina."

"We are experiencing an avalanche of support," Mahoney said. "We struck a nerve in the hearts of Americans about parental rights and the encroachment of government in the private lives of everyday citizens."

The DCF agency and Boston Children's Hospital now want no part in the controversy and confirmed that Justina's medical care will be transferred back to her original physicians at Tufts Medical Center, a demand that cost the Pelletiers their parental rights more than a year ago.

The Pelletiers' controversial case involves the term "medical child abuse" which refers to parents who seek excessive care for their children that could be potentially harmful. It also underlines challenges to the medical community in diagnosing patients who show both physical and psychiatric symptoms.

Lou and Linda Pelletier lost custody of Justina following a medical dispute with Boston Children's Hospital in February 2013.

Tufts Medical Center diagnosed Justina in January 2012 with Mitochondrial Disease, a rare medical condition that is maternally inherited and caused by genetic mutation, according to Arthur Caplan, director of the Division of Medical Ethics at NYU Langone Medical Center. Caplan said that the chances of inheriting Mitochondrial Disease are 1 in 6,000, and the symptoms often overlap other medical conditions, making it difficult for professionals to diagnose.

At Tufts, Justina underwent an extensive medical treatment program related to her Mitochondrial diagnosis under the direction of Dr. Mark S. Korson, a respected physician who specialized in metabolic disorders. In addition, all surgical procedures were approved by medical insurance.

According to Lou Pelletier, he took his daughter to Boston Children's Hospital to seek treatment for a negative reaction to the flu. They went to visit Dr. Alejandro Flores, her gastroenterologist, who had recently transferred to Boston from Tufts. However at Boston Children's Hospital, the request to see Flores was denied, and Jurrian Peters, a doctor just out of Harvard Medical School, treated Justina.

Peters assessed Justina's symptoms and brought in a psychologist, who concluded that her medical problems were psychiatric, a disease called Somatoform Disorder.

Boston Children's Hospital then asked the Pelletiers to sign a form agreeing to cease any further medical treatment in regards to Mitochondrial Disease. When the Pelletiers objected and demanded to take Justina back to Tufts where she had been treated for a year, Boston Children's Hospital brought DCF in and stripped them of their custodial rights on grounds of alleged medical abuse.

Justina has spent the last 13 months detained in two Massachusetts's facilities against her parents' wishes: Wayside Youth and Family Support Network facility in Framingham, Mass., after spending a year at the Boston Children's Hospital.

The Pelletiers were allowed weekly one-hour supervised visitations with their daughter. Her father said he has watched his daughter's health deteriorate since the DCF has suspended her medical treatment for Mitochondrial Disease. She now is paralyzed from the waist down and must use a wheelchair.

Mat Staver, founder and chairman of Liberty Counsel and the Pelletiers' attorney, has argued more than 30 cases before the U.S. Supreme Court throughout his career "The more I learned, the more I realized there was an issue within the Boston Children's Hospital, DCF, and the Massachusetts juvenile court system," Staver said.

Staver said that under DCF care, Justina has been denied education, religious services and adequate medical treatment. Subsequently, he said Justina's health is failing and she has fallen two grades behind her classmates.

Pelletier said the recent turn of events are strides in the right direction, but he will not be fully satisfied until Justina is released from DCF custody. He hopes to have his daughter home prior to the next scheduled court date on March 17, 2014.

"I consider myself a pretty strong human being, but this experience has torn apart the very fabric of my being," Pelletier said. "How a government can put a beautiful little girl through this mental and physical torture is something I will never understand."

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Source: Justina Pelletier's Family gets support from lawmakers, by Bridgette Bjorio, Fox News, March 3, 2014