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.
The majority of information I found about this case comes from a two-part story in the Boston Globe (click here for part 1 and here for part 2) and an ABC News story (here). These articles offered the greatest detail, but they rely largely on anonymous sources when it comes to the details of the dispute. I recommend reading the links at the end of this post for more information and to see examples of some of the reactions I mention. The parties involved in the legal struggles are under a gag order and are not allowed to discuss the case with the media, though Justina's parents have violated that order, appearing, for example, on Fox News. In addition to the gag order, the medical teams involved in Justina's care are also barred from discussing individual patients by HIPAA regulations, which guarantee patient privacy.
The Details, As Reported
Justina Pelletier is 15 years old. For several years, she had been sick off and on. Starting in 2010, she began suffering severe stomach cramps and blockage. After exploratory surgery, doctors at Connecticut Children's Hospital discovered cartilage wrapped around her colon. They removed the cartilage and Justina's appendix, but her condition did not improve. In 2011, her doctors referred her to a gastroenterologist at Tufts, Dr. Alejandro Flores. In 2012, surgeons performed a cecostomy, a relatively new procedure. Dr. Flores referred her to Dr. Mark Korson, a respected specialist in mito disorders. Dr. Korson reportedly made the diagnosis of a mitochondrial disorder by classifying each of her symptoms. He apparently did not order a muscle biopsy, which is a standard means of diagnosing mito disorders, and it is unclear whether or not he ordered blood or CSF tests. Justina's older sister was also diagnosed with a mito disorder after having a muscle biopsy.
In early 2013, Justina suffered a bout of influenza and gastrointestinal symptoms. Dr. Korson recommended her family take her to see Dr. Flores, who had transferred to BCH. Having stopped eating, her parents brought her by ambulance to BCH on February 10. She was seen in the emergency room by neurologist Dr. Jurriaan Peters. After getting Justina's history, he questioned the mito diagnosis, noting that she had not had a muscle biopsy and that her metabolic workup was not unusual. He called in a psychologist, Dr. Simona Bujoreanu. Dr. Bujoreanu reportedly noted that Justina's symptoms got worse when her mother was around. This led to the suspicion of a somatoform disorder, in which distress manifests as physical symptoms not adequately explained by a medical diagnosis.
Justina's parents rejected the psychiatric diagnosis and treatment plan, insisting instead on continuing her medical treatment, which included "Tegretol for neurological problems, Metoprolol for a rapid heart rate, and Midodrine for boosting blood pressure" (Boston Globe). According to the Globe article, it is not the first time they opted against psychiatric treatment for Justina, having rejected mental health services in 2011 as part of Justina's treatment.
This is where DCF became involved, as the BCH doctors suspected medical child abuse, a term that has recently been proposed instead of Munchausen Syndrome by Proxy. Justina was moved to BCH's psychiatric wing, her parents' visitation rights eventually being limited. In the summer of 2014, DCF discussed moving Justina to Webster House in New Britain, CT, but Webster House backed out when Justina's father, Lou, threatened to sue them if they took Justina. Although they eventually visited and softened their stance, Webster House declined to take Justina, stating, "We have determined, unfortunately, that we are unable to take on the risk of becoming involved in a protracted legal battle that could be very costly." In January of this year, she was moved to a foster care program at Wayside Youth and Family Support. In February, DCF discussed transferring her to Shared Living Collaborative, but they allegedly declined to accept Justina because of the nature of the case and media attention it has drawn. This past Friday, February 28, it was reported that DCF is endorsing a plan to return Justina's medical care to Tufts.
Throughout all of this, Justina's parents have stated that her condition has deteriorated. In contrast, BCH says that she has shown improvement, but, due to HIPAA, no details are available.
Articles about this commonly use terms like "kidnapped", "hostage", "horror" and "nightmare". Many frame the issue in terms of parental rights. Some go for the full-on conspiracy-mongering. The majority tend to support the parents, viewing BCH, DCF and the courts as overstepping their bounds and doing far more harm than good for Justina. They tend to assume that Justina's condition as described by her parents is unequivocally correct. Conservative and Christian groups have rallied around the parents, protesting outside the courthouse and holding a vigil outside Wayside Youth and Family Support. State legislators have even started working on a resolution calling for the immediate return of Justina to her parents. Few, if any, articles side with DCF, taking the BCH diagnosis without question. Some mainstream media, like the Boston Globe, have taken a more middle-of-the-road stance, as has at least one state legislator.
The core dispute involves her diagnosis. The Tufts doctors believe that she has a mitochondrial disorder and have prescribed a number of medications and vitamins. The Boston Children's Hospital doctors believe that her symptoms are psychologically based and that the treatment regime for the mito disorder is overtreatment and puts Justina at increased risk of harm. Other than some of the drugs that were prescribed by Dr. Korson, we do not know what all her treatment at BCH involves or whether her family has sought out other treatment options (e.g., alternative medicine). The basis of the "medical child abuse" allegation, therefore, is that Justina is being overmedicated.
So, are her parents and the doctors at Tufts right? Or are the BCH doctors correct? Those not directly involved in the case cannot make that conclusion without knowing all of the information available to her doctors at both locations. We don't have access to the information leading up to the diagnoses, nor do we know the details around whether or not the treatments have been objectively beneficial. What makes this case somewhat unusual is that both Tufts and BCH are large, respected institutions. It's not a case of legitimate doctors against an obvious quack. Rather, we have two competing, relatively new and controversial diagnoses. What is at stake?
If the Parents Are Correct
If Justina's parents are correct and Justina does have a mitochondrial disorder, then erroneously taking her away from her parents can cause completely unnecessary stress and emotional trauma for both Justina and her family. In addition to the psychological burden of separation and dealing with the court system, there are the burdens of time (going to court, driving long distances to visit, etc.) and money (lawyer fees, medical costs for the altered treatment, if not covered by Medicaid, travel expenses and so on) that would otherwise never have occurred. Medically, discontinuation of her treatment plan could, potentially, result in a more rapid progression of her mitochondrial disorder, assuming that the drugs prescribed by her doctors at Tufts have actually been effective in stabilizing her condition.
If she is placed in a foster home, it is possible that the new family will be very loving and attentive to her needs, but there is also the risk that her new caregivers may have been inadequately vetted and may be abusive. That risk is especially concerning in the case of a child with reportedly complex medical needs.
If the parents are correct, and Justina's separation from her family continues, then emotional harm is being done to both her and her family with no benefit.
If Boston Children's Hospital Is Correct
On the other hand, what if the parents are wrong? What if Justina does not have a mitochondrial disorder, but instead has, as BCH contends, a somatoform disorder? What would be the impact of immediately returning her to her parents?
By all accounts, her parents appear to be absolutely convinced that her mitochondrial disorder diagnosis is correct and will correspondingly pursue treatment for that. They had reportedly already been averse to mental health services before they even approached BCH. If Justina were returned to them, it is almost certain that she would resume the cocktail of drugs and vitamins that had been prescribed to her. This could put Justina at increased risk of serious harm from unnecessary drugs for no added benefit: Tegretol (carbamazepine) may increase the risk of developing a serious or life-threatening blood disease, as well as carry other side effects that negatively affect her quality of life; Metoprolol can increase the risk of adverse cardiovascular complications and potentially worsen allergic reactions, if she has any allergies; and Midodrine can dangerously elevate blood pressure, as well as cause side effects that decrease quality of life.
In addition to the risks associated with over-medication, if Justina's symptoms do stem from a psychological cause, she likely would not receive the mental health care that she needs to treat her underlying anxiety. This would mean she would continue to experience physical symptoms, such as pain, nausea, weakness or dizziness potentially leading to more unnecessary and ineffective medical treatment with no resolution of her symptoms.
If BCH is correct, and she is immediately returned to her parents, the she is at risk of physical harm that could be serious and life-threatening.
Hopefully, I've made clear just how complex this case is and how difficult it is for bystanders and laypeople to make any sort of objective, informed conclusion about it. Emotions run very high and often lead people to make hasty judgments not supported by facts. The most common approach I've seen is support for the parents' rights to decide their child's medical care. More extreme versions of this almost seem to view the parents' rights above all else, despite the fact that children are not property; their rights to make medical decisions for their children are not absolute. Certainly, no child should be taken from their home and away from their parents without some damn good reason to do so. Alleging abuse should not be done lightly. Yet few of the sources I've read consider the other side of the coin. There is potential for very serious harm to Justina, if the allegations are correct. Child abuse and custody cases are complicated to begin with, but they are made even more so when medical care enters into the equation. The issue calls for moderate, nuanced discussion, not knee-jerk condemnations of either the parents or BCH/DCF based on insufficient data.
ETA: Forgot to include the list of additional reading. Here it is:
Additional Reading and References Used
- ABC News - Boston Children's Holding Child "Hostage?"
- Age of Autism - Soylent Greenwashing: The Compact Fluorescent Mandate, Mito-Epidemics and the Brave New Mercury Apologism
- Boston.com - Justina Pelletier, child in year-long custody case won't be moved out of Framingham facility
- Boston Globe - The Justina Pelletier Case: A medical collision with a child in the middle (part 1)
- Boston Globe - The Justina Pelletier Case: Frustration on all fronts in struggle over child’s future (part 2)
- FoxCT - Mass. Representatives Ask DCF To Release Justina Pelletier
- Justice for Justina (petition)
- Justina Pelletier Prayer Vigil and Witness (March 1st vigil held outside Wayside Youth and Family Support)
- MetroWest Daily News - State authority questioned at vigil for Conn. teen
- Patrick F. Chinnery - GeneReviews: Mitochondrial Disorders Overview
- Women of Grace - Outrage Grows Over Justina Pelletier Case