Something fishy is going on at Boston Children’s Hospital.
Take the Hilliard family, for instance. In 2006, the Hilliards took daughter Eithene to Boston Children’s after she was born with birth defects. After a couple of years, Jessica Hilliard asked that her daughter be tested for mitochondrial disease. She was tested, and after hesitation she was diagnosed.
In 2011, Eithene’s health deteriorated. The physicians revoked the diagnosis of mitochondrial disease and charged the Hilliards with neglect of their daughter’s medical condition. An ethics committee became involved. The Department of Children and Families (DCF) was brought in to investigate.
The Hilliards were absolved about the same time their daughter passed away and their son Gabriel began testing for mitochondrial disease (it often runs in the family). The Hilliards were accused of making his symptoms up. More specifically, they were suspected of having Munchausen By Proxy, a syndrome whereby parents falsely believe their children are sick or cause the sickness themselves. The DCF became involved again and almost took custody of Gabriel, but the Hilliards managed to have him transferred to Tufts Medical Center, where a mitochondrial disease expert took over his care.
The Hilliards aren’t the only family to encounter similar problems with Boston Children’s. Claudia Felder ran into problems with her daughter’s care in 2012. Katie Higgins, a former nurse at the hospital, resigned when she blew the whistle on inappropriate care from the psychiatry ward in precisely these types of situations.
Which makes the Pelletiers’ story all the more tragic.
15-year-old Justina Pelletier has mitochondrial disease. Or does she? For years she was treated for the disease by the same mitochondrial expert at Tufts who treated Gabriel, but when she caught the flu in February 2013 (something especially dangerous for individuals with mitochondrial disease) she was rushed to Boston Children’s. One of her regular physicians had just transferred to the renowned hospital, and both her mito specialist and her family wanted her to see that particular doctor.
But physicians at Boston Children’s disagreed with the mitochondrial disease diagnosis. They quickly diagnosed her with somatoform, a mental disorder that causes a perception of symptoms that have no (detectable) underlying medical condition. They prohibited the Pelletiers from seeking a second opinion and charged them with medical child abuse. The Pelletiers begged to have their daughter transferred to Tufts, but security blocked the doors and refused to let them leave. The police showed up. The DCF became involved and took custody of Justina.
This past November, Judge Joseph Johnston issued a gag order for the case when media scrutiny from the Boston Globe and local Fox station began building. Lou Pelletier, however, has violated the gag order because he fears for his daughter’s life. Since that day in February 2013, Lou and his wife Linda have had seriously curtailed visiting privileges: they currently see Justina just once every Friday for one hour. She is no longer receiving treatment for mitochondrial disease, and, according to Lou, her health is rapidly deteriorating.
Mitochondrial disease is notoriously difficult to diagnose. It is a catchall term for hundreds of diseases and, as Dr. Mark Korson, the Tufts mito expert, emphasizes, the variety of symptoms can be a setup for medical child abuse accusations.
By the time Justina arrived at Boston Children’s in February, she had undergone several colonoscopies and a relatively new type of intestinal surgery, and she was then taking a variety of medications. To physicians at the hospital, the mito diagnosis seemed much less certain, and the parents a little overbearing (physicians at other hospitals had also noted the difficult personalities of the Pelletiers). Despite knee-jerk reactions to media accounts of the case, it’s fair to assume that physicians at Boston Children’s had Justina’s best interests in mind — they felt it necessary to step in and provide what they thought was the best care for her, despite the demands of her parents.
Lou claims her health is deteriorating, but Boston Children’s released a statement to the opposite effect following a court hearing:
“We are pleased with the progress our patient made when she was at Boston Children’s and with her continued progress.”
Despite Boston Children’s altruistic motives, there are still several problems here. First is the hospital’s influence over the DCF. If Boston Children’s says there’s an issue, the DCF comes running to do its bidding. As a government organization, the Massachusetts DCF has a notorious shortage of medical personnel and therefore relies on free consultations to make decisions — consultations that often come from the acclaimed Boston Children’s Hospital. A bad consultation, then, could leave parents with little or no power to care for their own children. Second is the terrifying (negligent?) lack of communication between physicians at Boston Children’s and the physicians who oversaw Justina’s care for years. Lastly, this issue raises a simple question: should the government be allowed to do this?
In 2013, 11-year-old cancer patient Sarah Hershberger was at the center of a similar medical controversy. Her Amish family didn’t want her to undergo chemotherapy. Physicians said she would die without it. The courts got involved. The question was, who should win? Medical science or parents’ rights?
The same question is fundamental to Justina’s case. The question revolves around that problematic and ambiguous term — medical child abuse. Its philosophy, of course, is sound. If parents are contributing to excessive and harmful treatments for their children, they are guilty of medical child abuse.
The application is not so simple. Those who are in a position to best detect medical child abuse are the physicians who most regularly treat the child — not new physicians, not the government. And that is the problem with Justina’s situation. Boston Children’s jumped the gun on bringing in the big boys at the DCF. And the DCF, understandably yet naively, trusted Boston Children’s to a great extent.
The result is the sad situation as it currently stands. The Pelletiers have no influence over the fate of their own daughter, and their only fault appears to be agreeing with one side of a medical disagreement.
The government got involved to “mediate.” Now there’s a problem.
—Ryan Slauer is a pre-med senior studying economics and Latin
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