A Custody Battle that Nearly Took Justina’s Life


Hospital (Photo credit: morrissey)

Earlier this year, in her New Life Support Debate blog post, Julia shared the plight of a pregnant woman who was forced to stay on life support in order to keep her baby alive, a decision that would cost the family additional pain, and rendered her baby so unhealthy that he eventually died. The story that I will comment on does by no means depict the same circumstances, but it mirrors similar concerns of those outlined in post: The New Life Support Debate.

This month, 15-year-old Justina will be returning to the care of Tufts Medical Center after being held in a psychiatric ward for more than a year against her parent’s will. Before being admitted, Justina was under the care of Dr. Mark Korson, Chief of Metabolism at Tufts University, and being treated for mitochondrial disease.

But when Justina’s parents brought her to Boston Children’s Hospital after a complicated case of the flu, a doctor assessed Justina’s symptoms and brought in a psychologist, concluding that her medical problems, including her difficulty of eating and walking, were brought on by a psychiatric disease known as somatoform disorder, in which people are believed to be imagining their illnesses.

Boston Hospital attempted to have Justina’s parents declare that they would no longer continue their daughter’s medical treatment, and that it was medical abuse. Her parents, disagreed with the hospital’s diagnosis of their daughter having an imagined illness, so they refused to sign off on the hospital’s declaration.

When the parents disagreed with the physician at Boston Children’s Hospital, the hospital called the Department of Children and Families (DCF). Four days later the DCF and a judge took custody of the child, placing her in a mental institute. Her father was issued a gag order and was prohibited from speaking about the custody battle of his child. West Hartford psychologist Dean Hokanson, a psychologist that worked with Justina for five years, said, “They (the parents) were actually being accused of being too active in pursuing health care matters for their child.”

Meanwhile in the psychiatric ward, Justina’s medical treatment, including her pain medications were discontinued and replaced with psychiatric drugs. Her health rapidly deteriorated. A year later Justina’s father nervously broke his gag order, and began speaking out about his daughter in attempts to have his daughter get medical treatment she so clearly needed.

DCF has dropped the complaint against Justina’s father for having broken the gag order by publically speaking about concerns for his daughter. Justina’s parents Lou and Linda say “Justina is barely recognizable as her health has deteriorated so badly.” As a result of her father speaking out about his daughter’s plight, Justina has now been put back into the hands of doctors at Tufts where they will resume treating her for her mitochondrial disease.

Thankfully, Justina is receiving treatment again, but it must have been extremely painful for her parents to see their daughter go through so much pain, all the while battling legal custody of their daughter…a fight that still lives on.

What are your thoughts about the situation that Justina and her family encountered? Please comment below and let us know.

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Dana Howell

As an Executive Assistant to the CEO and President of Campaign Consultation, Inc. I primarily work on initiatives with Very Special Older Properties (VSOP), Transit Choices, and the School of Social Work. Prior to joining Campaign Consultation, I worked as account manager for a growing medical company, interned with both the U.S. House and Senate focusing on health care and national security, and served as part of the Commerce Department for the U.S. Embassy in Copenhagen where I helped U.S. companies find potential business partners in Denmark. Read more.