By Rose Hoban
When Maxine Eichner’s daughter was 10 years old, she started having migraine headaches that were so serious that she’d spend the day in bed. Then her daughter started falling: Once, twice, multiple times a day. She could attend school only part time, couldn’t keep food down and ended up in a wheel chair, sustained by a feeding tube.
Years passed as Eichner, a law professor at UNC-Chapel Hill, and her husband felt increasing desperation as they sought an answer to their daughter’s deteriorating health .
“We took our child to doctor after doctor, and many doctors, when they couldn’t make sense of what was going on, decided that she must be pretending, she must be faking, she must have psychological problems,” Eichner told lawmakers at the General Assembly during a May hearing of the Senate Judiciary II Committee.
It took dozens of doctors, eight years and travel to medical centers in at least four states to diagnose their daughter, but not before many doctors told them to quit.
Eichner’s daughter was eventually diagnosed with mitochondrial disease, a genetic problem affecting the part of a person’s cells that generate energy.
But the process was grueling for the entire family.
“A few doctors thought that the psychological problems must be mine, I must somehow be encouraging her, or even provoking her to make up these symptoms,” Eichner told the panel.
“Imagine you were a parent with a child who had a very complicated medical condition – in fact, it may have taken years to get an actual diagnosis,” said Rep. Jonathan Jordan (R-Jefferson) as he presented the bill’s language. “And someone has told you it’s all psychological; someone has told you that you’re engaged in child abuse.”
That’s happened in several high-profile cases. Some children with rare, quirky, conditions such as mitochrondrial disease, commonly known as Mito, have been removed from their parents’ custody by local officials.
In a well-known 2013 case, Mito patient Justina Pelletier spent most of 16 months in a locked psychiatric ward of Boston Children’s Hospital in the custody of Massachusetts child-welfare authorities. They accused her parents of medical child abuse, a term used to describe parents who seek unnecessary or potentially aggressive interventions for children.[pullquote_right]Eichner’s daughter, who preferred to not have her name used, is now a 22-year-old college student whose health problems are under control. She plans to go to graduate school in public health.[/pullquote_right]That’s why Eichner was advocating for a bill that would give parents the benefit of the doubt as they spend what is often years getting to the bottom of rare childhood diseases.
It can take as much as a decade to get a proper diagnosis. A study done by Swiss-based pharmaceutical firm Shire, which specializes in treatments for rare diseases, found it takes an average of 7.6 years for someone in the U.S. to have a rare disease correctly diagnosed. The report also found that patients saw at least eight physicians and had two or three misdiagnoses along the way.
“But you still have to go maybe to an emergency room, if you’re on vacation, or you’re somewhere else, and you run into another doctor – a new doctor who may not be familiar with the issue,” Jordan said. “And they may report you to child-protective services for child abuse.”
Eichner was pushing for a way to protect those parents.
“The this term ‘medical child abuse’ is relatively recent,” she said.
“This broad definition created by doctors seems to be expanding the definition of what child-protection officials in court see as child abuse,” said Eichner, whose expertise is in family law.
Behind the medical child abuse situation are legitimate instances where parents lied about their children’s symptoms, a problem known as “Münchhausen syndrome by proxy,” named for the great literary spinner of yarns.
“In that situation, that parent is either inducing symptoms in the kid or lying about symptoms that the child doesn’t have,” Eichner said. “That’s an OK situation for the state to intervene.”
But she’s also researched the problem in North Carolina and found about a dozen situations where doctors accused parents of medical abuse, when they were only looking for answers.
“This [legislation] clarifies that when there is a legitimate medical dispute between two doctors about a child’s condition, the responsible party to make that choice is not the state,” Eichner said.
The legislation she proposed assumes that all the doctors who are examining the child are given access to the child’s full medical record as part of the process of protecting parents from an abuse accusation.
Julia Adams-Scheurich is a longtime lobbyist on disability and children’s issues at the General Assembly. She said passage of this bill would mean a significant improvement for families. Adams-Scheurich has a rare genetic disease, Ehlers-Danlos syndrome, which can cause joint and skin problems, along with falling, extensive bruising and long healing times for affected joints.[pullquote_right]Eichner said she’s writing a Law Review article about the issue of ‘medical child abuse’ to be published later this year or early next.[/pullquote_right]Often those symptoms look, to the uninformed eye, like the results of physical abuse.
Adams-Scheurich worked with legislators on the bill, which she said still had technical issues to be resolved. In the end, it never was filed, a casualty of the often chaotic end of the legislative work session.
She said that if all the parties could get to an agreement, North Carolina could create legislation that would become a national model.
“It’s a serious concern. This is a reality for parents of children with Elhers-Danlos syndrome and problems like it,” Adams-Scheurich said. “Lives could be in jeopardy if doctors don’t know.”