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A Justina's Law is needed to protect other kids like Justina Pelletier

June 18, 2014 - Andrea Johnson
Justina Pelletier finally went home today.

Justina is the 16-year-old Connecticut girl who has been held against her will by child welfare officials in Massachusetts for the past 16 months. Her story has resulted in a firestorm of controversy about the treatment of children with rare diseases and parental rights to make medical decisions for their children.

The best coverage of the story has probably been provided by The Boston Globe, which did a series of stories a few months ago that can be found here: http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html A story about the girl's homecoming can be found here: http://www.bostonglobe.com/metro/2014/06/17/judge-orders-custody-justina-pelletier-returned-parents/mDWtuGURNawSuObO0pDX4J/story.html As the Boston Globe reported, the saga began in February 2013 when Justina, then 14, became seriously ill. Justina had nearly lost the ability to walk and had lost her appetite. Her parents took her to Boston Children's Hospital on the advice of a doctor at Tufts who had been treating her for a rare ailment called mitochondrial disease, an illness that her older sister also has.

Justina's old gastroenterologist was now practicing at Boston Children's, but Justina was not seen by that doctor. Instead, she was seen by two other doctors who decided that she actually had a psychiatric illness called somatoform illness. Her parents objected to the diagnosis and wanted to remove her from Boston Children's and take her for a second opinion at Tufts. At that point, Boston Children's reported the parents to the state's child welfare agency for "medical child abuse." A judge gave custody of Justina to the state and the girl was confined to a locked psychiatric ward and her visits with her parents and older sisters were severely restricted.

The Globe's account suggests that Justina's parents were difficult for the doctors and child welfare officials to deal with and that probably prolonged the girl's stay in state custody. Justina is apparently also a kid with quite a complex medical history and also has learning disabilities that may make her more vulnerable than other girls her age. It's also true that health care privacy laws prevent Justina's doctors from telling their side of the story. Still, it seems pretty evident that Justina Pelletier should never have been taken into custody in the first place. Her parents had appropriately sought out medical care for their sick daughter at a well-respected hospital and, when they disagreed with doctors there, planned to exercise their rights as parents and take her to another hospital for treatment. After 16 months in the care of the state, Justina Pelletier has most definitely not improved. She is still in a wheelchair and has lost ground educationally. When she was finally allowed to speak to the public, she begged the judge to send her home.

Justina's father is threatening a lawsuit and plans to pursue all avenues available to him at the state level to keep hospitals from doing to other children what was done to Justina. I hope he is successful. No other family should have to endure this type of treatment. Other states should also consider adopting Mr. Pelletier's proposed "Justina's Law."

 
 

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