A new type of abuse

Mothers accused of faking their children’s illnesses often make for salacious headlines.

Fort Worth, Texas: “Mom said her baby stopped breathing and turned blue. She was the cause, officials say”

Milwaukee: “Nurse mom accused of subjecting 10-year-old daughter to unnecessary medical procedures”

Portland, Oregon: “Woman doped breast milk for attention, police say”

British pediatrician Roy Meadow was the first to document the bizarre phenomenon in 1977, when he published a case study of a woman who’d apparently been contaminating her child’s urine samples, leading to false diagnoses, and another who kept her child sick through repeated salt poisoning. Based on those examples, Meadow dubbed the disorder Munchausen Syndrome by proxy, a nod to the already established psychiatric ailment in which patients seek medical care for imagined diseases.

The name stuck, and soon doctors across the globe were reporting cases of disturbed mothers — it is almost never fathers — and over-medicalized children.

In more recent years, after a string of overturned convictions abroad raised doubts about the reliability of the Munchausen diagnosis and the doctors making it, child abuse specialists in the U.S. proposed a new, simpler way of categorizing mothers who seek unnecessary treatments for children.

Physicians diagnosing what’s now known as “medical child abuse” are not required to assess the mental health of the parent or their intent. Instead, doctors must show only that a child received unnecessary or excessive medical care and that a caregiver instigated it.

With this vastly widened net, critics say doctors have wrongly accused some mothers who expressed genuine concerns about their children’s health, leading to painful family separations and threats of criminal charges.

Often, the doctors making these accusations are child abuse pediatricians, a small but growing medical subspecialty trained to assess suspicious injuries and report their findings to child welfare agencies. Only a small fraction of the cases handled by these doctors involve concerns of medical abuse. Texas Children's handles about two dozen a year, according to one of its doctors, and one expert estimates about 1,600 mothers nationally are reported to authorities annually.

Medical abuse on the rise

Texas Children’s Hospital has evaluated a growing number of suspected medical child abuse cases.

Jiachuan Wu / NBC News / Data posted on Texas Children's Hospital's website

As part of a broader investigation into the work of child abuse pediatricians in Texas, reporters for NBC News and the Houston Chronicle scrutinized seven cases of mothers from across the state who were accused of medical child abuse. They reviewed thousands of pages of medical records and court documents and interviewed dozens of physicians, lawyers and social workers, as well as the accused parents.

These cases often begin with a child abuse pediatrician or another physician second-guessing years of treatments for complex or rare medical conditions. In some instances, the child’s treating physicians disagree with accusing doctors, leaving child welfare workers, who often have little medical training, to determine what’s best for the child.

The evidence is rarely straightforward, but reporters identified problems with the ways doctors handled some of these cases.

In one from 2017, a Child Protective Services worker told parents that the medical team that flagged potential child abuse did not believe their daughter really suffered from a bleeding disorder. The family recorded the conversation and shared the audio with reporters. Records later showed, however, that the bleeding disorder had been verified via medical testing.

In another case from that same year, a child abuse pediatrician ordered covert video surveillance of a mother whom she suspected of exaggerating her teenage daughter’s chronic pain and digestive issues, symptoms that the doctor believed were mental, not physical. The doctor wrote that she was concerned the mother might tamper with the girl’s medical equipment, records show. The secret hospital-room recording did not reveal anything unusual, however, and months later, another doctor identified the cause of the girl’s digestive problems and repaired it with surgery.

Few experts question that some mothers, in rare instances, intentionally harm their children through medical treatment, perhaps for sympathy or financial gain, experts believe. But critics say the medical child abuse diagnosis is too broad, poorly defined and, therefore, easy to get wrong.

“The process for diagnosing what they call medical child abuse is subjective, it's vague, it doesn't have a clearly tested error rate,” said Maxine Eichner, a professor at the University of North Carolina School of Law who has studied the way medical child abuse allegations play out in court. “This is a process of belief. This is not a process of scientific testing.”

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Among the warning signs that child abuse pediatricians are taught to look for: A mother who frequently describes symptoms that are not verified by medical testing. A mother who insists on second or third opinions after a normal test result. A highly attentive parent who is unwilling to leave her child’s side. A mother who is fluent in complex medical terminology. A mother who solicits online donations to cover the costs of a child’s medical treatment.

“The problem is that many of the warning signs describe many parents I know, particularly those whose children suffer from complex and hard-to-diagnose medical problems,” said Eichner, who added that she has observed an increase in accusations against mothers whose children are believed to suffer from mitochondrial disease and other rare genetic disorders.

In two of the cases reviewed by reporters, the alleged victims were born premature and suffered developmental delays as a result. One 2011 paper by child abuse specialists in Ohio even identified premature birth as a possible risk factor for medical child abuse, hypothesizing that some mothers of preemies come to enjoy “the positive attention” from doctors during the initial stay in the neonatal intensive care unit, triggering a desire to keep their child sick as they grow older.

Dr. Eli Newberger, who founded the child protection team at Boston Children’s Hospital in 1970, said that theory ignores a far more likely explanation: Research shows that mothers who give birth prematurely and who have watched their babies nearly die often suffer from post-traumatic stress disorder and, as a result, remain on high-alert for medical problems, even as their babies grow healthier.

Harper was prescribed oxygen support as an infant.

Doctors who suspect these mothers of overstating their child’s symptoms should initially offer “a compassionate response,” Newberger said, but too often pediatricians intent on protecting children “seek to label and to punish.”

“So the answer is to remove the child, rather than help the mom," Newberger said, criticizing that approach.

These trial separations, either through a voluntary agreement or a court order, aim to show whether a suspected mother is guilty. If the child’s condition improves or if doctors are able to wean the child from medical treatments while away from the mom, some child abuse pediatricians consider that to be proof of abusive parenting.

But that doesn’t necessarily prove a mother has attempted to harm her child, said Loren Pankratz, a psychologist in Oregon who has testified on behalf of dozens of parents accused of medical child abuse.

“Maybe the child’s health improved over time,” Pankratz said. “Maybe a doctor misdiagnosed the child. Maybe mom was overly anxious, or maybe she misstated or simply misinterpreted her child’s symptoms. Those are all far more likely explanations, and none justify tearing a mother from her child.”

Dr. Christopher Greeley, the top child abuse pediatrician at Texas Children’s Hospital, said his team does not make these allegations lightly.

“These kids often do have medical issues, and they often do have complex medical needs, and to separate that is often a challenge,” Greeley said. “This is not a decision that’s made without everybody who’s caring for the child being brought to the table and talking through that specific concern.”

To distinguish abusive parents from those who are merely hyper-vigilant or anxious, Greeley said it’s important that doctors sit parents down and explain their concerns, giving them an opportunity to agree to less-invasive medical care, before involving Child Protective Services.

Hospital officials insist that’s what happened in the case of Ajshay James. But that’s not how she remembers it.

'We prayed for this'

James, now 38, thought it was strange when, a day after arriving at Texas Children’s Hospital West Campus in Houston, in August 2017, doctors started talking about weaning Harper from her oxygen support.

They had just survived a disaster, James thought. Her home was flooded, and she had no idea where she was going to live. Plus these weren’t Harper’s normal doctors. But after initially resisting, James signed off on a plan to reduce Harper’s breathing treatments while they remained in the hospital, medical records show.

An overnight sleep study a few days later delivered good news. It showed that Harper still suffered from mild apnea, but her breathing had improved since the last time a specialist performed the test more than a year earlier. Doctors told James that, based on the new results, Harper did not need breathing support.

James, a business and marketing consultant, says she called a friend to celebrate. Without the bulky oxygen tank tethered to Harper, James could finally make plans for the Disney trip they’d long discussed, both she and the friend recalled in interviews.

A Texas Children’s doctor noted James' reaction in Harper’s medical record: “After telling mother results of sleep study she stated, ‘We prayed for this. ... Very happy to hear the good news.’”

Ajshay James with a onesie that was too big for her daughter when she was born 16 weeks premature. Elizabeth Conley / Houston Chronicle

James didn’t know that, behind the scenes, a different Texas Children’s doctor was quietly building a case against her. Dr. Jeanine Graf, the chief medical officer at Texas Children’s Hospital West Campus, would later testify that she became concerned about the possibility of medical child abuse the moment she met Harper. The girl appeared too healthy for the long list of health problems listed in her medical chart, she would say later.

Graf is not a child abuse pediatrician or psychiatrist, but she has testified as an expert in identifying signs of Munchausen Syndrome by proxy — a label some doctors use interchangeably with medical child abuse — and has co-authored a paper on the subject.

A review of medical records revealed that this was not the first time a Texas Children’s doctor had raised a concern about the way James described her daughter’s symptoms. A doctor wrote in the spring of 2016, when Harper was just 8 months old, that possible seizures described by James could not be verified through medical testing. The doctor floated the possibility that she was exaggerating, noting that James “appeared to be excited to be at [the] hospital.” And Harper’s primary physician later reported that she believed James tended to overstate her daughter’s health problems.

James said nobody at Texas Children’s ever raised the earlier concerns with her and insists she always did her best to describe Harper’s symptoms accurately. At no point has anyone accused her of giving her daughter medications or treatments that weren’t ordered by a doctor.

Despite Graf’s concerns, a different Texas Children’s physician signed papers discharging Harper from the hospital on Sept. 5, eight days after she arrived during the hurricane, with instructions for James to continue giving her daughter all the same medications.

A day later, two Child Protective Services investigators showed up at the friend’s house where James and Harper were staying. One of them explained that the agency had received a report from Texas Children’s alleging that James had left against medical advice — though that’s not what medical records show — and that she had been giving her daughter unneeded medication, according to James and one of the investigators’ notes.

The initial report to Child Protective Services from Texas Children’s also claimed that James had arrived at the hospital “completely dry and dressed in designer wear,” according to agency records, seeming to question her story about escaping her flooded home during the hurricane.

James said she denied the allegations and, after showing the agents her discharge papers and prescription orders, agreed to return to the hospital.

“I thought we were just going to run a test to clear things up,” James said. “They told me if I didn’t come voluntarily, they would come back with a court order and that things would be worse for me.”

In interviews, James described what happened next.

At the hospital, they were met by a Texas Children’s social worker, James said. The woman asked the child welfare workers if they’d explained everything.

“I have some questions,” James remembers saying.

“I don’t have answers,” she remembers the social worker responding.

After a short conversation, James said, the hospital worker lifted Harper into her arms.

“Now I’m going to go this way,” James remembers the social worker saying, “and you’re going to go that way.”

James began to panic. She hadn’t signed anything agreeing to medical care for her daughter, although the hospital social worker wrote that she verbally consented. The social worker also wrote in medical records that Child Protective Services had taken custody of Harper and that James was barred from seeing the girl. But records show the agency didn’t ask James to sign a voluntary agreement granting the hospital authority to perform a separation trial until a day later, and James said she didn’t realize she had no legal obligation to agree to the plan.

She was in a trance, she said, as the investigators ushered her out of the hospital. When they reached one of the workers’ vehicles, James said she glanced down at Harper’s empty car seat, and the reality of what had just happened began to set in.

She and Harper had rarely been apart. James remembers holding her on her bare chest for hours at a time in the neonatal intensive care unit, when Harper was still tiny and frail, listening to her breathe. Now who was going to keep her safe?

She looked up from the car seat and pleaded with the investigators.

“When am I going to see my baby?”