On March 25, 2014, a Massachusetts judge ruled to grant permanent custody of 15-year-old Justina Pelletier to the state Department of Children and Families. Justina’s family is outraged, and has been fighting since Valentine’s Day of 2013 for their daughter to be returned to them. She has been diagnosed with a rare mitochrondrial disease, one which DCF says is fabricated in Justina’s head. Her family is worried about her, saying her health is deteriorating from lack of proper care in the psychiatric ward where she is living. Why are these parents being denied their rights, and why is this child being kept from her medical team?
Photo credit: Michael H/ Digital Vision/ Getty Images

In February of 2013, then 14-year-old Justina Pelletier was admitted to Boston Children's Hospital in Massachusetts. One of the premier children's medical facilities in the country, Justina was referred to Children's Hospital by her metabolic disorders specialist, Dr. Mark Korson, to see a gastroenterologist Justina already had an established medical relationship with. What has happened since is nothing short of a medical horror story, only it isn't fictitious.

It all started with a referral

She's been treated by a team of respected doctors from Tufts Medical Center for years, including Dr. Korson who is the chief of the metabolic department.

Justina, like one of her older sisters, has been diagnosed with mitochondrial disease, a group of rare genetic disorders that affect how cells produce energy, often causing problems with the gut, brain, muscles and heart. She's been treated by a team of respected doctors from Tufts Medical Center (also in Boston) for years, including Dr. Korson who is the chief of the metabolic department. Well, she had been treated for "mito" for years. That treatment stopped four days after admission to Children's Hospital, when the doctors there decided Justina was actually suffering from somatoform disorder, a psychiatric illness in which bodily symptoms are purely psychological and have no anatomic roots. Those same doctors determined Justina's parents, Lou and Linda Pelletier, were interfering with Justina's medical care by not acknowledging her "true" illness and pushing for "unnecessary" treatments. As a result, doctors from Children's Hospital contacted the Massachusetts Department of Children and Families (DCF) to charge the Pelletiers with "medical child abuse," or a child receiving unnecessary and potentially harmful medical care at the instigation of a caregiver. That day, February 14, 2013, the Pelletiers were escorted from hospital grounds by security, and have not had legal custody of their daughter since.

Legal state kidnapping

That gastroenterologist Justina initially transferred to Children's Hospital to see? She still hasn't seen him. In fact, he isn't allowed to see her or to have any input in her case. Neither is Dr. Korson or any of the other specialists who treated Justina for years. Justina has been moved to a psychiatric facility and her parents are only allowed once-weekly visits for an hour at a time — for Justina's "safety." And after numerous court proceedings, on March 25, 2014, a judge ruled to grant permanent custody of Justina to Massachusetts DCF. Justina had effectively been legally kidnapped by the State of Massachusetts in the name of medical child abuse because they don't agree with the Pelletiers' course of treatment — which was all doctor recommended.

It's not just the Pelletiers

The Pelletiers aren't the only parents to recently go through a state-kidnapping of their child. Alex and Anna Nikolayev made headlines in April of 2013 when California Child Protective Services (CPS) sent police to forcibly remove their then 5-month-old son Sammy from their home. The Nikolayev's video recorded the removal, which is admittedly hard to watch as a parent. Their offense? The Nikolayevs sought a second opinion after heart surgery was recommended by doctors at Sutter Memorial Hospital. Sammy had been at Sutter for almost two weeks for "flu-like symptoms" with several mistakes made by staff. "If we got the one mistake after another, I don't want to have my baby have surgery in the hospital where I don't feel safe," Anna said. The Nikolayevs discharged Sammy against medical advice and drove directly to Kaiser Permanente Hospital for a second opinion. While at Kaiser, police came to interview them prompted by a call from doctors at Sutter. The attending doctor at Kaiser said he had no concerns for Sammy's safety and discharged him. The next day Sammy was taken into state custody.

Sammy was returned, with a caveat

At a hearing a few days later a judge returned custody officially to the Nikolayevs, and authorized them visitation of Sammy any time they wanted. The judge also ruled, however, that Sammy would need to stay temporarily at yet a third hospital, Stanford Medical Center, and that the Nikolayevs would need to follow all future medical advice or risk losing custody again. Can you imagine being court ordered to do anything a doctor ever said — without the ability to seek a second opinion — or risk losing custody of a child? While this may seem rational to some, it isn't rational to a family who's ever been misdiagnosed.

Bad first day for Baby "Annie"

Yet another incidence of parental rights being trampled on by state social workers occurred in Pennsylvania to Jodi and Scott Ferris back in 2012. According to the lawsuit they filed against the doctors at Hershey Medical Center, their newborn daughter was held at the facility against their will, then custody was removed from them when they refused to allow a Hepatitis B vaccination without testing to verify necessity. Once custody of Baby "Annie" was taken by the state, the social worker ordered administration of the vaccine by hospital staff, who then informed Jodi and Annie they must leave hospital grounds, only authorized to return every three hours to nurse. At a hearing the next morning "Annie" was returned to the Ferris' custody, but only after an extremely traumatic first day of life for their little babe.

Parental rights are under attack.

Will these cases be the new norm?

Arguably, the most concerning aspect of all of these cases is the likelihood they will become the standard rather than the exception. With increased government involvement in health care due to the Affordable Care Act and a push by some in Congress to ratify the controversial United Nations Convention on the Rights of the Child (UN CRC), parental rights are under attack. The UN CRC is especially concerning, as any nation which ratifies it is bound to it by International Law. The UN CRC has some really logical aspects to it, such as forbidding the death penalty for children and establishing a child's right to life, to a name and to form and express their own opinion. But it also provides sweeping power to governments, who would then be able to mandate sex education begin at age four, appoint a "guardian" to monitor a child and birth and evaluate your parental decisions and store all medical records in a national database, accessible by any teacher, doctor or social worker at any time.

A birthday present for Justina

In the cases of the Pelletier, the Nikolayev and the Ferris families, this concept that government officials can know better than a parent what a child needs is troubling. Yes, there are times where children are in danger and intervention is needed. But there are also times when intervention is overreaching, and these all seem to clearly be the latter. Especially in the case of Justina, who wants nothing more than to be home with her family to celebrate her sixteenth birthday next month in May.

More on parental rights

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Children: Who do they belong to?
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