Wednesday, January 24, 2018

Mitochondrial disease and medical child abuse

Justina Pelletier, a Connecticut teenager with mitochondrial disease, was admitted to Boston Children’s Hospital in 2013 on the advice of a metabolic geneticist at nearby Tufts Medical Center so she could see her longtime gastroenterologist, who had recently transferred to Boston. But the hospital — without consulting the Tufts geneticist — decided the girl’s problem was psychiatric rather than mito.

When her parents tried to get Justina transferred to Tufts, Boston Children’s called the authorities, claiming they were harmfully interfering in her care. A juvenile court judge agreed, and Justina’s parents lost custody. After more than 16 months in state custody, much of it in a locked psychiatric ward, the traumatized teen was returned to her family — still in a wheelchair, and still sick from her disease.

In another well-documented case involving Boston Children’s, Jessica and Sean Hilliard of Attleboro, Massachusetts, asked the hospital to test their 3-year-old son for mitochondrial disease, which often runs in families, after he showed symptoms of the rare disorder; his older sister had died of mito there in 2011. A hospital pediatrician accused the parents of inventing their son’s medical issues, after which they transferred the boy’s care to Tufts, where he received several diagnoses, including mito.

Yet, that didn’t stop Boston Children’s from calling a Tufts child-abuse specialist, who reported the Hilliards for “overmedicalization.” The state intervened, but backed off only after the parents took their son off of his medications. During the ensuing six-week hospitalization, the boy’s condition worsened, until the treatments were restored. Authorities eventually dropped all charges…

Those two cases generated lots of publicity. But in recent years, the U.S. mitochondrial disease community has been hit with hundreds of other false accusations of medical child abuse. MaryBeth Hollinger of MitoAction says the problem is getting worse.

“This issue comes up over and over,” said Hollinger, director of education, support and advocacy at the Boston-based nonprofit organization. “Munchausen syndrome by proxy is a real thing and it happens extremely rarely. But this new term ‘medical child abuse’ is really a game changer. It’s basically Munchausen by proxy but with no boundaries — and it often includes medical neglect, which I find ironic.”…

“We need medical professionals, but the way I see it, the families are experts on their child in a way the doctor isn’t,” Hollinger explained. “We are not all the same, even if we have the same genetic mutations.”

She added: “Child protective agencies are out there, and they work quite closely with the doctors. But they’re overworked and they know nothing about rare diseases. So, if some doctor or school says ‘I think they’re overdoing it,’ Child Protective Services will ask the name of this disease. They’re already aligning themselves — and not in your ballpark.”

Hollinger said she’s spoken with close to 100 families that faced similar situations.

“We may get calls for a different reason, but in the course of the conversation, a lot of times you uncover that they also went through accusations of medical child abuse,” she said. “So even though they didn’t call us about this, it sort of comes up. This is why they’re afraid.”…

Eichner [Maxine Eichner], who in July 2015 wrote a New York Times opinion piece on the subject, said that for every real case of medical abuse, there are at least two false positive cases. Her research led her to conduct an online poll that attracted 95 respondents in 30 states who had been falsely accused of overmedicating their children.

“My guess is that’s just the tip of the iceberg,” said Eichner, who joined MitoAction’s medical child abuse task force at the urging of her daughter, whose mito symptoms began at the age of 10, when she had her first migraine. Ultimately, the disease caused the girl to miss nearly two years of school.

Eichner said she and her husband were lucky not to have been charged with medical child abuse during the eight years they searched for answers.

“When I started to look into the science, I was horrified. All throughout our history, many doctors had jumped to the conclusion that it was either in her head, or that I was part of the problem,” she said. “My husband and I are both attorneys and we advocate for ourselves. What has happened with so many of these parents, in my view, is horrifying and completely unconstitutional. It violates parents’ right to choose medical care in their kids’ best interests.”…

Eichner said that despite advocacy and lobbying on this issue by MitoAction and other groups, “I don’t see any huge progress having been made in these past years.”

In her New York Times op-ed, Eichner also quoted Mark Korson, MD, the geneticist who treated Justina Pelletier at Tufts, as saying that such false charges have “snowballed” nationally. In Michigan, one of the few states that compile such figures, an average 51 accusations of medical abuse were filed against caretakers every year between 2010 and 2013; extrapolating this to the entire U.S. population, Eichner wrote, translates into more than 1,600 charges annually.

Some of the diagnostic criteria doctors use for medical child abuse are parents seeking care from more than one medical provider, and more than one organ system being affected. “Mito diseases invariably involve both of these,” she said. “It affects more than [one] organ system, and because of that parents seek more than one medical expert.”  …

“We want to make sure that the physicans who treat these children are educated [about mitochondrial disease],” she said. “We also want to make sure the parents understand how to best communicate with their medical team so that it’s clear that when they’re asking questions or seeing multiple doctors, they’re really just trying to get answers to this disease that has so many unknowns — and that there are no negative intentions.”

Yet Hollinger spoke of a general lack of awareness, noting that “most doctors were never taught anything about mitochondrial disease.” Because the disease involves energy production, it varies greatly from one person to the next.

“You can have two siblings in the same family,” she said. “Little sister A can have severe neurological issues and can’t walk, and big sister B, with the exact same mutation, might not have seizures, but have severe gastrointestinal issues. People just don’t understand.”

In addition, she said, “depending on how your energy systems are going, the symptoms can totally vary — not just week to week or day to day, but even minute to minute.”

For all these reasons, Hollinger advised parents to watch what they say around doctors and nurses, and to think twice before posting photos of their children on Facebook or Twitter.

“You have to really be careful about what you share, and how it could impact your child down the line,” she said. “I would definitely say no photos. What law enforcement does is use social media to see if you are guilty or not. It is the most important aspect of their investigation. They consider social media your crime scene. Any picture that could embarrass your child at less than 18 years old is considered abusive.”


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