The Controversial Child Abuse Epidemic Tearing Families Apart

Jessica Holt* was only a few months old when her mother, Sally*, noticed that something was wrong. Jessica didn’t feed well and, rather than gaining weight like most infants, she soon began to fall off the growth charts. As a result of her poor growth, Jessica was quickly given the “failure to thrive” label by her pediatrician.

After beginning feeding therapy and receiving nutrition consultations, Jessica’s health problems only intensified. By age four, she had developed severe food allergies and asthma, and she stopped growing entirely.

Like most parents, Sally was frantic for answers about her daughter’s medical issues. When her local care team couldn’t get to the bottom of Jessica’s complex needs, she took her to an out-of-state specialist. There, Jessica was diagnosed with eosinophilic esophagitis, and Sally was advised to stop feeding Jessica entirely. Instead of eating food, Jessica received all of her nutrients by way of a special formula fed through a tube.

Within a month, Jessica, by then age seven, had gained 10 pounds and finally started to sleep through the night. Yet her troubles were far from over.

Sally and her husband tried to re-introduce foods to Jessica along the way, but Jessica reacted severely to everything they tried and had to rely primarily on her feeding tube. As she got older, she also began to develop several new health problems, including severe muscle pain and debilitating fatigue. When Jessica landed in the hospital at 9 years old with vomiting and dehydration, her doctor told her parents that it “simply wasn’t right for a child to be in that much pain,” her mother recalls.

It was time, she decided, to get to the bottom of Jessica’s health problems.

Sally didn’t know it then, but only six years later, her continued attempts to treat Jessica’s worsening condition could not only threaten the custody of her daughter, but result in criminal charges. Sally’s alleged crime? Medical child abuse (MCA), a form of abuse described as “a child receiving unnecessary and/or potentially harmful medical care at the instigation of a caretaker.”

In recent years, accusations of MCA in America—and stories like Sally’s—have sharply escalated, surfacing troubling questions about the accuracy of the diagnosis and the ethics of the medical system.

For Sally, the ordeal continued when Jessica’s gastrointestinal (GI) doctor sent her for a muscle biopsy to investigate the possibility of mitochondrial disease. Mitochondrial disease is a rare and complex disorder characterized by dysfunction of the mitochondria, tiny powerhouses located within every cell (other than red blood cells) in the body. These miniscule structures are responsible for producing 90% of the energy used by the body to sustain life and support growth; conversely, problems with them can create dysfunction in every system and organ of the body.

Jessica’s muscle biopsy came back with abnormalities of the mitochondrial shape and structure, along with multiple dysfunctions of the pathways that the mitochondria use within each cell to produce and transport energy. All of her treating physicians, both in and out of state, agreed that Jessica had mitochondrial disease.

The Holt family did their best to come to terms with Jessica’s diagnosis, and the idea that their daughter suffered from a progressive disease that has no FDA-approved treatment or cure. Meanwhile, as they tried to accept their new normal, Jessica’s health continued to decline. Puberty is notoriously challenging for mitochondrial disease patients, and Jessica proved no different. She began to fall frequently, developed gastroparesis (a paralysis of the stomach) and dysfunction of the autonomic nervous system, and could no longer tolerate the formula she consumed through her feeding tube.

Desperate for help with Jessica’s declining health, Sally looked to her daughter’s care team at Seattle Children’s Hospital—but she was swiftly told that there was no one in Washington who specializes in pediatric autonomic disorders. Instead, the doctor emailed Sally a list of specialists, none of whom practice in Washington, forcing Sally to once again travel out of state to have her daughter seen by the appropriate specialist. There, in the same hospital that diagnosed and treated Jessica’s gastrointestinal problems, Jessica was diagnosed with postural orthostatic tachycardia syndrome (POTS), given a permanent IV line, and started on regular IV hydration to help alleviate her autonomic symptoms.

At first, none of Jessica’s doctors appeared to be concerned about her treatment plan. A few years passed, largely without incident, and even with some mild improvement in Jessica’s health. That changed abruptly when Jessica, now 15 years old, was admitted to Seattle Children’s in January with increased GI problems, nausea, and food intolerances. Her blood pressure kept dropping, and Sally noticed that Jessica wasn’t urinating. Sally quickly relayed her concerns to the attending physician, but he just as quickly dismissed them. According to Sally, the resident refused to contact Jessica’s treating physicians out of state or even to review recent x-rays that showed a possible bowel obstruction. He began to question Jessica’s need for a permanent IV line, and he decided to withhold Jessica’s allergy medications and “mito cocktail,” a collection of vitamins, minerals, and co-factors that can be crucial for mitochondrial disease patients. In retrospect, Sally says, “something was clearly off about that hospital stay.”

That physician was about to set in motion an accusation that would—as it has for an increasing number of families—upend Sally and her daughter’s life.

THE MCA CONTROVERSY

MCA’s complicated and controversial history can be traced back to 1951, when British researcher Richard Asher first termed the diagnosis of self-harm in a medical setting “Munchausen Syndrome.” Later, this concept was expanded by British pediatrician Roy Meadow in 1977 to include the harm of others using the label “Munchausen Syndrome by Proxy” (MSBP).

The National Institutes of Health define MSBP as a form of child abuse where “the caretaker of a child, usually a mother, either makes up fake symptoms or causes real symptoms to make it look like the child is sick.” It is believed that parents with MSBP make their children appear sick, or even create a sickness, in order to gain attention and sympathy for raising a child with special needs.

But what began as a diagnosis meant to describe cases of clear and intentional caregiver-fabricated illness has been extrapolated to a list of more than 100 caregiver “red flags,” many of which contradict each other. In fact, in 2006, the American Journal of Psychiatry Law published a paper on what it termed the “persistent problems” inherent in the MSBP label, noting that:

“If the mother appears calm or distressed, charming or hostile, distant or over-involved, either appearance can be described as characteristic of mothers with MSBP. These warning signs have repeatedly been substituted for diagnostic signs, which amounts to conviction by profiling.”

Much of the ensuing controversy over MSBP stemmed from its focus on the intention and profile of the caregiver rather than the harm inflicted on the child. MSBP—recognized in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM­5) for the first time in 2013 as Factitious Disorder Imposed on Another (FDIA)—​is a psychiatric condition that requires a thorough evaluation of the accused parent by a trained psychiatrist to diagnose. A child’s pediatrician cannot diagnose a caregiver with MSBP, and a psychological diagnosis of a parent isn’t sufficient to prove that child abuse has actually occurred, either. This complexity led to a multitude of problems for prosecutors who were required to prove the existence of both the intention to cause harm and harm sufficient to qualify as abuse in order to garner a criminal conviction.

As a result, in the early 2000s, Dr. Thomas Roesler and Dr. Carole Jenny—an American husband and wife team of medical child abuse pediatric specialists—proposed a new form of child abuse that was meant to solve these problems by focusing solely on the harm or potential for harm inflicted upon the child, instead of the psychiatric diagnosis or intention of the parents.

The name of the diagnosis? Medical child abuse.

But while their intentions were ostensibly useful, the results were arguably disastrous.

Maxine Eichner, a University of North Carolina law professor, mother of a mitochondrial disease patient, and author of the New York Times editorial “The New Child Abuse Panic,” notes that the pioneers of the medical child abuse umbrella, including Dr. Jenny (now on the Seattle Children’s child abuse team), are the same doctors responsible for shaken baby syndrome epidemic, now largely discredited, and before that, the satanic sex abuse panic of the 1980s.

These child abuse physicians, according to Eichner, believe that they can uncover child abuse that no one else can detect. Eichner claims that “the central reason given by these doctors that medical child abuse is better than Munchausen’s by Proxy is that it’s diagnosed much more frequently. For them, that’s a virtue. For everyone but this particular group, this should be horrifying.”

That said, no one is arguing that medical child abuse doesn’t exist. “Munchausen’s is real. Munchausen’s by Proxy is real. Medical child abuse is real,” says Dr. Sumit Parikh, who serves as director of the Cleveland Clinic Neurogenetics, Metabolic & Mitochondrial disease program and is a past president of the Mitochondrial Medicine Society. “What has happened has snowballed, but I think the initial impetus [to start diagnosing medical child abuse] was founded in reality and in truth.”

Although rare, MSBP and cases of legitimate caregiver-fabricated illness have long captured the media’s attention. Most recently, Lacey Spears was convicted in March of murdering her infant son by adding massive quantities of sodium to his feeding tube—a tube that he never should have had to begin with, according to the doctors who testified against her.

Rather than denying the existence of medical child abuse entirely, many doctors and families are instead arguing that the definition has been expanded upon so much that it’s become a kind of modern day Crucible; fallacious and dangerous accusations under the auspices of saving lives are actually ruining them.

MCA NUMBERS ON THE RISE

According to the American Academy of Pediatrics (AAP), actual medical child abuse is extremely rare. In a 2013 clinical report, the organization estimated that health professionals will “likely encounter at least one case during their career,” with a reported incidence of approximately 0.5 to 2.0 per 100,000 children younger than 16 years old. (By contrast, mitochondrial disease, which is considered a rare disease, is estimated to occur in approximately 1 in 4,000 people.)

The number of reported allegations starkly differ from the AAP’s numbers, however. Although most states do not track cases of medical child abuse separately from other types of child abuse, Michigan does. And, as Eichner noted in her New York Times editorial, Michigan records indicate that an average of 51 charges of medical abuse were made against parents each year between 2010 and 2013. If these figures are indicative of national trends, they would suggest that more than 1,600 parents are accused of medical child abuse each year.

According to Dr. Mark Korson, a metabolic geneticist, the willingness by the medical community to accept a staggeringly high percentage of false accusations in order to protect an extremely small number of abused children is unacceptable. Until recently, Dr. Korson specialized in metabolic and mitochondrial disease medicine at Tufts Medical Center in Boston. He notes that newborn screenings—which are performed on all children at birth to test for a variety of inborn, treatable diseases—have a false positive rate of less than 1%. Although that rate is extremely low, it is still considered too high, and researchers are actively working to reduce it. Dr. Korson emphasizes that the impact on families receiving false positives are dire, ranging from financial and marital instability to an impaired ability to form healthy attachments with their newborns.

“There is no other area of medicine, no other test or procedure, that would allow such a high false positive rate,” Dr. Korson says. “If you tried to put that test before the FDA, it wouldn’t survive peer review because it’s so high.”

Which raises the unsettling question: just why are so many families wrongly accused?

DIAGNOSING MEDICAL CHILD ABUSE

The key issue with the MCA diagnostic process is that, quite simply, there is no clear criteria for what constitutes it, other than the hazy definition of caregiver-initiated treatment that causes harm or has the potential to cause harm. Doctors are also mandated reporters, required by law to report any instances of suspected child abuse; when this role as reporter collides with an ambiguous definition of what constitutes child abuse in a medical setting, doctors can become unwitting accomplices in an allegation epidemic.

While Dr. Parikh emphasizes that MCA exists, he notes, “I think that the field of medical child abuse is also struggling with ways to better ascertain whether a child may be a victim.”

In all cases of suspected medical child abuse, the AAP urges physicians to fully leverage the services of Child Protective Services (CPS) in order to enforce the appropriate “separation” between the child and the parents. Because CPS caseworkers aren’t medical experts, they frequently rely on child abuse pediatricians to investigate abuse allegations from a medical perspective and issue a recommendation on the appropriate next steps in each case—including whether to remove a child from parental custody.

Yet especially in complex medical cases like Jessica’s, tracking and compiling lengthy medical records and coordinating interviews with a host of doctors can be challenging to the point of insurmountable. Jessica, for instance, has seen dozens of specialists, spanning multiple states. In such convoluted cases, there is always room for misunderstandings between doctors and parents, and even for parents to make mistakes. As a result, “when you go back through patient’s files, you will always find something suspicious if you’re looking for it,” Sally says.

Dr. Korson has seen these problems manifest first-hand. Dr. Korson treated Justina Pelletier, the teenage girl who captured national attention last year when her parents were accused of medical child abuse; she was removed from her family for 15 months before legal action was dropped. After the Pelletier case, Dr. Korson left his position at Tufts to become the medical director for the Genetic Metabolic Center for Education, a decision he says was motivated at least in part by the increase in medical child abuse accusations leveraged against mitochondrial disease patients.

In the Pelletier case, he notes that his attempts to gather all of Justina’s physicians and caseworkers in a room to discuss the case were met with a “frank refusal.” This refusal, according to Dr. Korson, prevented open information sharing, and led to a situation where the doctor making the accusations of abuse was the “loudest one” in the room. The failure of the Pelletier case had “very little to do with diagnosis, and everything to do with a failure of process in how that case was managed,” Dr. Korson says.

“When looking through patient’s files, you will always find something suspicious if you’re looking for it.”_
To illustrate just how problematic this lack of open communication among physicians can be, Dr. Korson cites a harrowing case of two pulmonologists giving conflicting diagnoses—one suspected a child had cystic fibrosis, the other strongly disagreed—at two different hospitals.

When the child was later hospitalized for vomiting and diarrhea, the mother mentioned to the attending physician (yet a third doctor) that her child “could possibly” have cystic fibrosis. When that physician contacted a pulmonologist at his own hospital, it turned out to be the very doctor who didn’t support the cystic fibrosis diagnosis to begin with; that doctor subsequently accused the mother of “giving him” the diagnosis. The failure of the two pulmonologists to communicate initially about the child’s care led to the mother being accused of medical child abuse.

This kind of communication lapse isn’t rare, according to Dr. Korson. “If physicians communicated more, and honestly and extensively, there would be fewer accusations of medical child abuse,” he says.

THE UNASSAILABLE IVORY TOWER

Child abuse physicians are generally affiliated with large research hospitals, and, as happened in Sally’s case, are often employed by the same hospital where the MCA allegations were initially made. While common, this housing of the accuser and the reviewer in the same hospital constitutes a conflict of interest, according to Dr. Frances Kendall, a biochemical geneticist who specializes in mitochondrial disease.

Like Sally, Maria Shipley* was accused of MCA by a physician at Seattle Children’s, and her case was also subsequently reviewed by a child abuse pediatrician from the same hospital. Also like Sally, Shipley argues that many of the allegations leveled against her could have been easily explained if she had simply been asked about them. A discrepancy in the number of feeding tube bags she ordered, which was used as “evidence” that she was withholding food from her son, was easily explained by an independent medical records reviewer she hired. The reviewer tallied up every single bag order and matched it to her son’s medical records, and found that the child abuse team hadn’t accounted for a period of time where her son was ordered by the doctors to stop using the tube and try consuming food by mouth, instead.

“They tried to paint a terrible, terrible picture of what I supposedly did to him,” Shipley says.

Sally had a similar experience. In her case, the child abuse pediatrician charged with the task of reviewing Jessica’s medical records and making a recommendation to CPS conceded that he hadn’t reviewed all of Jessica’s records. He also wrote in his final report to CPS that all of Jessica’s doctors agreed that she was legitimately sick, which would make it difficult to pursue medical child abuse charges against Sally. However, despite his own admission that Jessica’s physicians were united in their belief that she was truly sick, he still found that Sally was engaging in MCA and recommended that Jessica be removed from her care.

“Figures suggest that more than 1,600 parents are accused of medical child abuse each year.”_
In medical child abuse cases like Jessica’s, the decision whether to pursue a removal, or even criminal charges, rests with CPS. However, because CPS relies primarily on the recommendations of child abuse pediatricians, the opinion of one non-treating physician is often given more credence than the opinions of many treating physicians. Although many parents, including Sally, provide caseworkers with statements of support from the child’s family and friends, and even community members with close ties to the child such as teachers, daycare providers, and therapists, Dr. Korson says that these community professionals’ opinions are often ignored.

There is an “impression within the ivory tower that observations within the ivory tower are more accurate or more reliable than observations from community professionals,” says Dr. Korson. As a result, Korson says doctors tend to discount symptoms reported by the parents unless they are directly observed in a clinical setting. There is also a resistance or refusal to observe a child within his or her home setting, or even to consider the opinions of a child’s teachers or therapist, all of which can be detrimental to the parents.

As, Christine Cox, director of outreach and advocacy for MitoAction, a mitochondrial disease patient advocacy group, puts it:

“The doctors have the power, but the reason they have the power is that the interest of the state in protecting the child is given a lot more weight than the interest of the parent in keeping custody of the child. If there is some risk that the child is going to be harmed, the interest of the state is to protect the child, and that’s a knee-jerk reaction.”

This understandable but dangerous impulse also contributes to another alarming aspect of these allegations: symptoms of rare afflictions, including mitochondrial disease, being mistaken for evidence of medical child abuse.

WHEN RARE DISEASES AND MCA COLLIDE

While statistics about the frequency of medical child abuse allegations are hard to come by, allegations seem to impact mitochondrial disease and other rare disease communities disproportionately.

Although MitoAction’s initial surveys indicated that medical child abuse allegations against the parents of mitochondrial disease patients specifically were relatively infrequent, it also showed an increase in allegations over time. So far in 2015, MitoAction has received 38 phone calls from parents of mitochondrial disease patients who have been accused, with many other parents also approaching MitoAction representatives at conferences and other events (the frequency of which is not tracked). These parents range from the freshly accused to parents whose children have been removed from the home for many months, according to MitoAction, and they also likely represent only a small minority of accused parents.

In mitochondrial disease medicine, there is what Dr. Korson calls a “crisis of care” due to a lack of appropriately-trained specialists. With so few specialists in the field, it is particularly critical that child abuse pediatricians—who are themselves not trained in mitochondrial disease—reach out to the child’s mitochondrial disease specialist before issuing a recommendation. If child abuse pediatricians do not read the full medical record, and do not convene the entire care team, it can be easy for misunderstandings by either the doctors or the parents to seem far more sinister than they actually are.

Mitochondrial disease is not the only disease suffering from this link to MCA. Patient advocacy groups for other rare diseases such as Ehlers-Danlos Syndrome (EDS) and dysautonomia, for example, report similar challenges in their community. While Dr. Parikh emphasizes that MCA poses a legitimate threat to children, he also concedes that these “catchall” diseases are difficult to diagnose, and this ambiguity of diagnosis can leave parents more vulnerable to MCA allegations.

One of the challenges facing rare disease patients is that the AAP has encouraged doctors to consider MCA alongside all other possible explanations for a child’s symptoms, rather than considering it only when other possibilities have been exhausted—which Dr. Parikh says would be the responsible method. Because the hallmark of many rare diseases are seemingly unconnected symptoms spread across multiple systems and organs, a physician who isn’t well-acquainted with their symptoms and diagnostic criteria might leap to a child abuse accusation instead.

According to the AAP, even when a medical explanation is found that explains at least some of a child’s symptoms, medical child abuse should still be considered. Although the AAP concedes that 30% of children involved in medical child abuse cases have underlying medical problems, it emphasized that these legitimate medical issues are not an excuse for what it perceives as harmful parental behaviors:

“Some parents are overanxious or difficult, and others perceive their child as vulnerable because of some earlier traumatic event, such as extreme prematurity, and may ‘shop around’ for a physician. When parental behaviors result in harm to the child, the child has been maltreated, whatever the caregiver’s motivation.”

Yet there remains no clear diagnostic standard for determining which parental behaviors have caused harm or could have caused harm to a child, and physicians often disagree with each other even on the same case. Unpacking what constitutes medical child abuse varies depending upon who you ask.

This ambiguity has left parents and families vulnerable—and has impacted mothers in a shockingly disproportionate way.

Loving Mother . . . Or Monster?

Although the diagnosis of medical child abuse does not formally contain a gender requirement—unlike MSBP, which is believed to be almost entirely unique to women—it is estimated that 93% of MCA allegations involve the mother. Even when the father is originally included in the allegations, such as in Shipley’s case, he is usually cited as a bystander who failed to take action to protect the child as opposed to an active participant. In the literature, the profile of the mother who engages in medical child abuse is one who is well-educated, seeks out second opinions, refuses to accept a diagnosis or lack of diagnosis, is knowledgeable about the child’s medical condition or works in the scientific field, or suffers from a similar disease herself.

[Full disclosure: I experienced this issue first­-hand when I was accused of medical child abuse during a highly contentious divorce in 2012. Because I had been told by my own physicians that I probably had mitochondrial disease (a diagnosis that was later confirmed), I felt entitled to insist that my children be evaluated for the disease as well. At the time, I had no idea that mitochondrial disease was such a minefield diagnosis, or even that my own medical knowledge and insistence on answers about my family’s health were considered medical child abuse “red flags.” Thankfully, my case was quickly closed as unfounded, but it opened my eyes to the real risk of advocating for my children’s health care in a mitochondrial disease context. To this day, I avoid seeking out medical care for my children and I am extremely careful about which doctors I see and the treatment plans that I adopt.]

“93% of MCA allegations involve the mother— the father is usually cited as a bystander.”_
Whether mothers manifest their concern in charm or hostility, their behavior can be considered a red flag for MCA. This damned if you do, damned if you don’t scenario seems to reflect a “fear of the power of women” ideology, Eichner explains, pointing to “the moms who are driving the doctor crazy” with a barrage of questions or suggestions of alternate treatments or diagnoses. But, at the same time, being overly helpful or kind can be cited as part of the profile, as a sign that the mother is seeking to “butter up the care team.”

In fact, the Michigan task force report regarding medical child abuse “claimed that mothers have an uncanny ability to convince doctors that their kid is really sick,” and to fool their doctors, and said this ability is attributed to the “fascinating and deceptive powers of those mothers,” Eichner notes. “These statements could have been taken straight out of the Salem witch trials.”

While Eichner concedes that there are legitimate cases where mothers make their children sick, she questions the dominant theory that these mothers do so in order to gain the approval of their children’s doctors and to feel the power of a medical setting. “[This theory] says more about the doctors who constructed this than anything else,” she says. “We are not in the 1950s, where there are no other mechanisms for women to exercise power. If we want to exercise power, that’s a damn odd way to do it.”

While most caregivers of medically complex children, and most caregivers in general, are women—which explains at least in part the frequency of mothers being implicated in abuse allegations—Dr. Korson also notes that doctors are quick to “press the psych button” for women. “If doctors don’t understand what is going on, a woman must be depressed,” he says. This trend of accusing women of psychiatric causes when medical professionals don’t understand what is going on can bleed over to their children, resulting in allegations of medical child abuse, he says.

“These statements could have been taken straight out of the Salem witch trials.”_
MitoAction’s Cox also emphasizes that many parents run into problems because they simply never consider that their behavior could constitute child abuse. “You always think that no one is going to accuse you because you don’t fit the profile of people who get charged with child abuse in the press, but that’s not the profile of medical child abuse at all,” she says. “It’s people who are educated, who might go head to head with the doctor; it’s a totally different set of criteria.”

THE AFTERMATH OF ACCUSATIONS

After accusations of MCA are made, according to Dr. Korson, parents are less likely to seek medical assistance, they become very careful about who they talk to and what they talk about, and long-term anxiety can develop in both the parents and the patients. These effects, Dr. Korson emphasizes, “don’t just disappear because the state closes the case.”

The parents I spoke to described harrowing situations involving the accusations against them. In Jessica’s case, two weeks after she was hospitalized, Sally received a phone call from CPS informing her that she had been accused of medical child abuse. Panic stricken, Sally quickly retained an attorney, gathered all of Jessica’s medical records, collected statements from teachers, school administrators, family and friends, and even contacted all of Jessica’s treating physicians.

After the first interview with CPS, Sally says, the family was hopeful: “[The CPS worker] basically said if it was up to her, she would close the case.” That worker’s report, however, was never submitted to the court, and it was not disclosed to Sally’s attorney when he requested the full case file. Instead, the case against Sally proceeded. Despite the fact that every doctor interviewed by CPS regarding Jessica’s case agrees that she has real, complex medical problems, the child abuse pediatrician assigned to Jessica’s case alleged that Sally was making the whole thing up, and that there is little to nothing wrong with Jessica at all.

A few months after she was accused, Sally received a letter in the mail stating that the allegations against her were considered “founded.” If she accepted the state’s determination that she had engaged in child abuse, a caseworker would be assigned to help the family access “services” that could assist them—if not, her case would be forwarded to the prosecutor for criminal prosecution.

She did, however, have the right to appeal. Sally immediately did so, sending in what she describes as a 3-inch-tall stack of medical records, statements, and letters in support of her case. Seven days later, CPS mailed her another letter informing her that her appeal was denied, and the state’s “founded” ruling remained in place. Her only option left is an appeal at the state level, but a fact-finding hearing has already been set before a judge to determine whether the state will proceed with criminal charges against her. To date, Jessica has never been removed from her mother’s care, and she continues to live at home with her and the rest of her family, including her sister, while the state pursues its case against her mother.

“We are not in the 1950s, where there are no other mechanisms for women to exercise power.”_
Jessica, a slim 15-year-old with long hair and a colorful hoodie, is eager to talk about how the accusations against her mother have impacted her family. “We are all so stressed about this,” she says, her voice shaking slightly. “There is a lot of anxiety. I am afraid about being taken out of my home. It’s where I feel safe; I don’t want to be taken from there.” She is also angry. “I am mad because they will not listen to what I say. They ignore me,” she says.

Sally is quick to point out that the state has limited Jessica’s access to medical care, and that her out-of-state physicians who have managed her care for the past eight years will no longer return their calls. Sally says that Jessica refuses to go to the doctor now, and Jessica agrees. “I don’t trust any doctors anymore,” she says. “I really don’t.” Jessica’s reluctance to seek medical care, and Sally’s own fear of being further accused, recently led Jessica to be admitted to the hospital with a life-threatening blood infection caused by an untreated urinary tract infection (UTI). One of the prior accusations against Sally was that she once took Jessica to the doctor to be evaluated for a UTI when Jessica did not actually have one. In this case, the decision not to have her evaluated led to a serious infection and a hospital admission.

In Shipley’s case, she was told to bring her son to the hospital for an exhaustive evaluation (including a mitochondrial disease workup) to determine the cause of his feeding problems and poor growth. On the morning of the fourth day, she and her husband were told that they needed to have a meeting with the doctors. “I thought maybe they found something,” she says. “But I came to find out it was a set up. Security, the police, and CPS were all there. We were taken into a small room, and police were blocking the elevator exits.” Two of her son’s doctors were there, and they “started saying that they didn’t believe there was anything wrong with him. They said it was my fault. They said it was all normal and I was exaggerating.”

CPS then advocated for the removal of both of Shipley’s children from her home, but the court declined to remove them due to the family’s lack of prior history and the lack of evidence against her husband. Instead, Shipley was forced to move out of her home for seven months, and she was allowed only 12 hours per week of supervised visits with her son, then just over a year old. She was prohibited from providing any of his care, such as feeding him or changing his diaper during his visits. “I felt detached from my own kids,” Shipley says, her voice cracking as she chokes back tears. “I felt like I was a stranger. I felt guilty even though I wasn’t. I felt like I shouldn’t even touch them or love them and I felt like everybody was watching me.”

A WAY FORWARD

As the medical community contends with these issues, a growing number of advocates, doctors, and patients are trying to devise tangible solutions to the problems at hand.

Although Dr. Korson and Dr. Parikh do not agree on every aspect of medical child abuse, their proposed approaches are surprisingly similar; both physicians advocate for a complete review of all patient records; a meeting held that includes all treating physicians, whether on the phone or in person; and an interview with the parents prior to making official accusations of medical child abuse. “Getting everybody’s perspective is very valuable and that alone can prevent the need to move forward with an accusation,” Dr. Parikh says.

Unfortunately, while an investigation “should be done as a partnership and as a group,” Dr. Parikh concedes that “this doesn’t always happen in the best of circumstances.” These medical child abuse investigations, when done correctly, are expensive and time-consuming, according to Dr. Parikh.

Still, Dr. Parikh looks to patient advocacy groups like MitoAction as the vehicles for ensuring that hospitals develop comprehensive and collaborative approaches for handling these types of accusations. While hospitals might initially balk at the time and expense involved in setting up child advocacy clinics to review medical child abuse claims, “having the support of child advocacy experts in this process would go a long way . . . so that there are less mistaken allegations,” Dr. Parikh says.

MitoAction, meanwhile, formed a medical child abuse task force in 2013 to consider the full spectrum of parent, physician, and legal concerns, and to issue recommendations from a patient advocacy perspective. This task force has since devoted a portion of the organization’s website to publishing an initial set of resources for parents who have been accused of medical child abuse. “We felt like there needed to be a collection of resources for families to review that were written from the point of view of the mitochondrial disease patient community,” says Cox. “If these allegations were to happen to yet another Mito family, there had to be some advice we could share with them in the midst of their world being turned upside down.”

The Mitochondrial Medicine Society, for its part, recently established a committee (which includes Dr. Parikh) to evaluate the previous diagnostic criteria and to establish a new set of criteria for diagnosing mitochondrial disease. Released online in 2014, and published in the September 2015 issue of Genetics in Medicine, this adapted criteria relies heavily on newer scientific advances, like genetic testing, and seeks to create a more streamlined, objective pathway to a mitochondrial disease diagnosis. Dr. Parikh hopes that this will lead to a more unified approach among mitochondrial disease physicians, along with more respect for the diagnosis across specialties, and fewer false allegations made against families.

Families have also taken to the legislature to pass new laws surrounding medical child abuse. Justina’s Law—which was inspired by Justina Pelletier—was introduced in Congress in June 2014, and was sent to the House Committee on Energy and Commerce. If passed, it would prohibit the use of federal funds to conduct or support treatment or research involving a ward of the state in which the individual’s health is subjected to greater than minimal risk with no or minimal prospect of direct benefit. A bill is also pending in Eichner’s home state of North Carolina that would prohibit parents from being accused of child abuse solely for following physician-recommended treatments—though Eichner points out that changing the law one state at a time will be a painstakingly slow process.

For the families who have been accused of medical child abuse, these systemic changes cannot happen swiftly enough. Sally’s criminal case remains pending, and Shipley and her family are struggling to put together the pieces since the charges against her were finally dropped a few years ago.

“I felt like I was a stranger. I felt guilty even though I wasn’t.”_
Since Shipley was allowed to move back in with her family, she has since taken her son to a new GI doctor who is not affiliated with Seattle Children’s. There, her son was tested for fructose malabsorption, which came back positive. With dietary modification, her son is now flourishing, and he no longer even requires a feeding tube. Seattle Children’s never ran that test, and the formula that her son was prescribed contained the very fructose that was causing his severe, then considered inexplicable, reactions. In fact, her son is doing so well now that he no longer even needs to see his GI doctor.

Shipley’s family, though, isn’t doing as well. The $95,000 cost of her legal defense drained both of their parents’ retirement funds, and she is currently in the process of a divorce. Both she and her older daughter now suffer from anxiety, and Shipley is also in therapy to recover from the trauma of being falsely accused. “I have a tremendous amount of guilt,” she says. “Even though I didn’t cause this, I feel like it was my fault.” Shipley is also reeling from the fact that there simply is no recourse against the doctors or the state that falsely accused her. She has tried to bring legal action against them, but all of the lawyers she consulted have told her that there is nothing they can do because technically they did their job by investigating. “They were all wrong, but they get to get away with it,” she says. “There is no one watching these people or checking on them; they just have so much power.”

Shipley cautions that many parents do not believe that this will happen to them, and that they do not understand the severity of these allegations. After her experience, however, she feels differently. “‘We never had a voice, we were never allowed to speak out. When you’re going through it, instead of innocent until proven guilty, you’re guilty until proven innocent,” she says. “If this had been Massachusetts [in the Salem witch trials], I would have been burned at the stake.”

* Names have been changed at the family’s request.

Lead image credit: William Sai-Palm

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Jody is a long-time techie turned freelance writer living in Seattle. Her online work has appeared on HuffPo, Time, and xoJane, among others. She writes about family, mothering, and life with a chronic illness from a staunchly (some might say stridently) feminist perspective.