Justina Pelletier to Remain in Massachusetts DCF Custody

Earlier this month, I wrote about the case of Justina Pelletier, a teenage girl who has been the center of a year-long-plus custody battle between her parents (Lou and Linda Pelletier) and the Massachusetts Department of Children and Families (MA DCF). The case has drawn national attention and sparked some rather heated opinions. The majority of articles, blog posts and comments have been strongly supportive of the Pelletiers, with most framing the situation as government overstepping its bounds and infringing on parental rights. Few took a more nuanced approach, sticking to the known facts and avoiding speculation.

For a little background, in 2012, Justina was diagnosed with a mitochondrial disorder by Dr. Mark Korson, Chief of the Metabolism Service at Tufts Medical Center. After suffering a bout of the flu in 2013, with subsequent gastrointestinal problems, Dr. Korson recommended she see her former gastroenterologist, who had moved from Tufts to Boston Children's Hospital (BCH). When she was admitted to the ER, the BCH physicians questioned the mito disorder diagnosis and suspected, instead, that she had a somatoform disorder. Justina's parents disagreed with BCH's proposed psychiatric treatment plan and were going to take her out of BCH to continue her mito disorder treatment. Fearing that this would delay proper psychiatric treatment and result in unnecessary medical treatment that would put Justina at increased risk of harm from the drugs prescribed for mito disorder, the BCH physicians called in the Department of Children and Families, fearing medical child abuse.

Thus began a thirteen-month courtroom and media spectacle. The latest development was announced yesterday, March 25.

A Confession

This post was very hard for me to write. For four years, now, I've been writing this blog. Four years putting out post after post refuting the claims of "anti-vaxers". For several years before that, I was active in the comments of a few different sites, trying to be quick to respond anytime someone questioned vaccines. All this time, so many hours pushing the pro-vaccine angle. But I just cannot, in good conscience, continue. Not any more. The little bit of income I earn for my efforts just isn't worth the guilt. Not after this past weekend.

What happened? What changed my mind? Last weekend, I attended the Pharma-sponsored Midwest Conference on Vaccines. This is the first time I've been to this conference, now in its sixteenth year, and the first time I've met many of my blogging colleagues face-to-face. Normally, all of my dealings with the inner workings of the pro-vaccine machine have been through email or snail mail. I get my orders. I write. I get paid. Simple, easy money. To say that this conference was an eye-opening experience is an understatement.

The Case of Justina Pelletier Calls for Nuance and Moderation

I've given a fair bit of thought as to whether or not to write this post. I may end up inadvertently offending people who have very firm opinions on the matter. The subject is rather controversial, evoking very strong emotions on both sides of the issue, which has gained national attention. The main problem is that what is known stems predominantly from media reports, with verified facts being unavailable. This is the case of Justina Pelletier, a 15-year-old girl who has been the center of a custody battle for over a year between her parents and the state of Massachusetts. The majority of coverage has taken the side of the parents. Most of the people speaking out do so on behalf of the parents, often quite vehemently decrying the Department of Children and Families (DCF) and Boston Children's Hospital (BCH), which started the ordeal. Articles siding with DCF are almost non-existent, but like their counterparts, take a very firm position based on media reports. Rarer still are measured, nuanced analyses of the story.

The dearth of more neutral approaches, and the vehemence with which people have spoken out about this, prompted me to write. I am not going to make any firm conclusions. I will not take a side. There isn't enough verified, primary source information available for me to do so. Instead, I will summarize the details that have been reported and talk a little about the possible scenarios: that the parents are right and that DCF and BCH are right. It is a complex topic about which I'd like to start a conversation, so feel free to post your thoughts in the comments below, but keep it civil.