Mother, Heal Thyself
Susan Hyde’s daughters spent years in and out of hospitals with a puzzling array of ailments. But what if they weren’t the sick ones?
No one envied Susan Hyde’s schedule. The 29-year-old mother of three young girls spent a typical week trying to eke out a paycheck and be with her children as much as she could. Working the overnight shift as a paramedic three days a week at Cook Children’s Medical Center, in Fort Worth, made that difficult. Not that Susan complained. Her girls were her life. She kept detailed baby books that showed every stage of their development. Even if she had just come home from a night shift, she would stand in front of her house, exhausted, waiting for the school bus with her daughters. Most evenings, she would give them a bath and sing songs like “You Are My Sunshine.” She treated the girls to Chuck E. Cheese’s for their birthdays, did craft projects with them, and took them shopping for clothes she could hardly afford. Her energy amazed those around her. “People would always say, ‘I don’t know if I could do that,’” said her mother, Patricia Andersen.
Susan’s routine was further complicated by her daughters’ medical issues. Six-year-old Heather had been diagnosed with attention deficit hyperactivity disorder and had been seen by doctors for breathing and blood sugar problems. Four-year-old Amy had been tentatively diagnosed with cystic fibrosis, a disease that affects the lungs and digestive system. Beth, who was almost three, was being treated for seizures and breathing problems and was often put in a wheelchair when she and her mother left the house.
In December 2006 Susan told doctors at Cook Children’s that Beth was suffering from abnormal stools, a frequent cough, and recurrent pneumonia—all symptoms of cystic fibrosis. Statistically, the odds of two half siblings—Amy and Beth have different fathers—being diagnosed with the rare and fatal genetic disease were remote; all three of the parents would have to be carriers, and even then each child would have only a one in four chance of developing CF. But the doctors’ fears seemed to be confirmed by a “sweat test,” which showed that Beth had elevated levels of chloride. Susan tried to look on the bright side of this devastating news. If doctors had an explanation for Beth’s symptoms, perhaps they could alleviate them.
But the little girl’s other problems worsened. Later that month, Susan wheeled Beth into Cook Children’s complaining that she had experienced an increasing number of seizures and would often turn blue. A physician team that included a pulmonologist, an infectious-disease specialist, a cardiologist, and a neurologist couldn’t pinpoint the cause of the attacks. Confounded, they admitted Beth to the hospital and hooked her up to an electroencephalogram (EEG) machine to monitor seizure activity.
Meanwhile, questions were mounting about Beth’s cystic fibrosis diagnosis. A genetic screening test showed that Beth had no cystic fibrosis mutations, a result that didn’t rule out CF but certainly lessened the possibility. In fact, Beth’s pulmonologist, Karen Schultz, began to wonder if Beth really had all these problems. Perhaps, she thought, Beth’s problem was her mother, who Schultz was concerned had been misreporting Beth’s symptoms. To test this theory, Beth’s hospital room was equipped with a hidden video camera. (The girls’ names have been changed to protect their identities.)
During Beth’s weeklong stay, from December 28, 2006, to January 4, 2007, Susan visited whenever she had a free moment, rushing between home, work, and Beth’s bedside. Beth didn’t have any seizures on camera. Nor did the camera capture any strange behavior on Susan’s part. Then, just as Beth was due to be released, Susan told the nurses that Beth had had a seizure in the bathroom—when the girl had been disconnected from the EEG and was out of the camera’s range.
Susan had also made a curious remark a few days earlier. She told the nurses that she had seen Beth on a video screen at the security area near the emergency room. That was odd. The video monitor tracking Beth’s stay was located not at the easily accessible security area but in a separate, secure room. No one was sure how Susan knew about the monitoring, just as no one was sure if Susan had taken Beth into the bathroom to fake a seizure off camera. But now, it seemed, the suspicion was mutual.
Schultz and her colleagues weren’t alone in their skepticism of Susan. Since 2000, when Heather was first brought to the hospital with mysterious symptoms, a series of health professionals had crossed paths with Susan and suspected that something wasn’t quite right. Susan brought her daughters to numerous hospitals for a bewildering variety of ailments that doctors often could find no evidence of. She gave medical histories that didn’t seem to add up.
All of this came to a head roughly a year and a half after Beth’s admission to Cook Children’s, when Susan found herself in court, fighting to keep her children. During the proceedings, more than eight thousand pages of medical documents were introduced, dating as far back as the nineties (some of them tracked Susan’s own medical history). The paper trail of doctors’ uncertainties ran through hundreds of visits the family had made to physicians and emergency rooms. The evidence the jury heard was grim and, at times, lurid. Prompted by Susan’s reports of a host of symptoms and maladies, doctors had subjected the three girls to a staggering number of tests and medications and even a surgery.
Attorneys for the Department of Family and Protective Services painted a portrait of Susan that was in stark contrast to her image as a selfless parent. This Susan Hyde was someone else entirely, a mother who, for reasons perhaps not known even to her, had falsified a series of medical ailments that turned her daughters into pharmaceutical pincushions. The list of medications the girls had been prescribed was daunting: Phenobarbital, Klonopin, Albuterol, Atrovent, Xopenex, Tobramycin, Pulmicort, Trileptal, Flovent, and Adderall, to name a few.
Matthew Cox, a pediatrician at Children’s Medical Center in Dallas who assesses child abuse and neglect, had not treated or examined the girls but reviewed their records for the state and found glaring inconsistencies in their medical histories. He testified that this was a case of “pediatric condition falsification,” a form of medical child abuse that, in its most extreme form, is popularly known as Munchausen by proxy. “By far,” said Cox, “this is the worst case I’ve reviewed or even read about.” (Susan, it should be noted, has never been charged with a crime. This story is drawn from multiple sources, including doctors’ trial testimony regarding the records.)
Susan wept on the stand, distraught at the prospect of losing her daughters. At the very least, she hoped that her daughters would be placed in the care of her mother and stepfather. But in the end, neither her tears nor her hopes moved the jury. On June 30, 2008, the state took Susan’s children from her, presumably for good.
The British pediatrician Roy Meadow first coined the term “Munchausen syndrome by proxy” in a 1977 medical journal article. Meadow had seen cases of parents who seemed to have done repeated, intentional harm to their children and disguised it as a medical issue. The phenomenon appeared to be a variation on Munchausen syndrome, in which a patient falsifies information or symptoms about himself to seek attention, sympathy, or treatment. (The condition is named for the eighteenth-century adventurer Baron von Munchausen, who was famous for telling outlandish stories about his life.)
One of Meadow’s case studies involved a six-year-old girl with recurring urinary tract infections who had been admitted to the hospital twelve times and undergone numerous catheterizations and seven major X-ray procedures, including a barium enema. She had been on antibiotics that caused drug rashes, fever, and bouts of lower abdominal pain. After the hospital staff grew suspicious of the mother’s reports, however, they started monitoring the girl’s urine samples. When the girl provided the sample with the help of her mother, the samples came back abnormal and tainted with blood; when she was supervised by a nurse, the sample was normal. After the hospital accused the mother of deliberately interfering with her daughter’s care, the six-year-old’s problems disappeared.
Meadow acknowledged that such cases are rare; pediatricians, by necessity, should usually trust parents’ accounts of their children’s symptoms. “But at the same time,” he wrote, “we must recognise that when mothers are wrong they can be terribly wrong.”
Three decades after Meadow coined the term, it has become a staple of popular culture. The best-selling novelists Jodi Picoult and Jonathan Kellerman have used Munchausen by proxy as a plot device in their books, and the condition has popped up in television dramas as diverse as The X-Files and Judging Amy. It’s not hard to see why. The idea rubs raw contemporary anxieties about “helicopter parents” who smother their children with attention and a medical establishment that seems at once godlike and all too fallible.
In the medical community, debates over Munchausen by proxy have grown heated and, often, confusing. Experts disagree about the very definition of the condition and have suggested a host of alternative names. Though “Munchausen by proxy” is still the most common layman’s term, many in the field use the phrase “factitious disorder by proxy” (FDP) or a broad, self-defining term such as “child or adult maltreatment through deliberate ‘problem’ falsification/deception.” Munchausen by proxy is usually reserved for the very worst of these cases. Some activists question whether Munchausen by proxy even exists.
Susan Hyde, a stocky blonde who often breaks into a friendly laugh, resides in a small yellow fourplex in Ennis, sixty miles southeast of Fort Worth, with two aggressively curious cats. Her tidy home is a shrine to her three blond girls, whose images adorn every wall of the pink living room. Behind her couch, a framed quotation from the Bible reads “These are the children God has given me. God has been good to me. Genesis 33:5.” Next to it, a photo of her girls shows them wearing matching lavender shirts and blue jeans, giggling for the camera.
By last fall, Susan was no longer working, leaving her plenty of time to think about her future. When I met her in October, she sat cross-legged on the floor and her mother, Patricia Andersen, joined the interview.
“Looking back, you said you did exaggerate some things,” Patricia said.
“Exactly,” Susan replied.
“You didn’t realize you were doing it at the time, but—”
“I’m not saying that I was perfect,” Susan said. “I’m not saying that, um, I absolutely didn’t do those things.”
She simply doesn’t think she should be judged so harshly. After her children were taken from her, Susan saw a psychiatrist, who diagnosed her with bipolar disorder, a condition that, he said, could have explained Susan’s behavior. There were allegations she flatly denied, but she agreed that she had stretched the truth when she was in a manic period. For instance, when she brought Amy to the ER with breathing problems: “I would be, like, ‘She was blue. She wasn’t breathing. You guys need to do something with her.’ That’s when my overexaggeration would come in. They’d say, ‘How long did it last?’ I’m like, ‘Too long.’ If it happens a second, it was too long. It was my child.”
In retrospect, Susan says she can understand why people were skeptical of her. By the time of her custody trial, Susan had recognized that she might have overreacted, though she says she did so only to make sure her kids got the best treatment. “I was intimidating. I was belligerent,” she told me. “It doesn’t make me a criminal.”
Listening to Susan tell her story, it was difficult to imagine the monster portrayed at her trial. She’d grown up in Iowa, an outgoing middle child in a happy family. She was rambunctious, always running around outside and riding a Big Wheel, not afraid to get dirty. At day care, she was a typical kid who got into trouble for acting wild. “I was kind of hellacious,” she said.
This largely normal childhood was marred by one horrific experience. At age five Susan was walking down the hallway of her house, playing with cheerleading pom-poms, when she stepped into a bedroom and saw her father lying in bed, covered in blood. He had committed suicide by cutting his throat. “I saw my dad laying on a white bed with his face down. His bare feet were facing toward the door, and there was blood on the bed,” she said. “I remember little things about my dad before, but not that much.”
Patricia took her children to see a child psychiatrist to help them heal from the trauma, but the incident wasn’t discussed much in the household, to the extent that Susan’s sister, Julianne, would later testify at the trial that she thought her father had died from an overdose of medication. Patricia says she answered any questions her children had. She just didn’t want to tell them everything at once.
“To be honest,” Susan said, “we never asked about it. We just eventually knew he committed suicide. We didn’t want the gory details.”
Patricia, who was a nurse, later dated and married Brian Andersen, an anesthetist whom Susan calls a stable role model. The couple were good providers, but they were also strict; Patricia and Brian regularly checked the mileage on the car Susan drove to and from school. Susan played clarinet and saxophone and worked as a cashier at the Hy-Vee grocery store with Julianne and her aunt. After graduation, she attended the University of Northern Iowa. She hadn’t been able to participate in sports since her sophomore year of high school, when she injured her knee, but she was a sports fan and decided to work as an athletics trainer at the university.
One day, a football player collapsed with a spinal injury, and the trainers labored to get him into a halo device and off the field. It was an eye-opening experience. “I didn’t really want to do the long-term care with patients, but the short-term care with EMS—I liked it,” she said. “Quite frankly, it’s an adrenaline rush.”
Eventually, Susan transferred to Creighton University, in Omaha, Nebraska, just over the border from Iowa. In 1999, soon after she’d graduated from the school’s paramedic program, she became pregnant with Heather. The father was a blond-haired, blue-eyed man nicknamed Sonny whom she’d met at a cookout. Susan thought he was sweet, though she says he wasn’t ready for fatherhood. She wasn’t sure she was ready for motherhood, either. “What were you thinking?” her mother asked after hearing the news. “I wasn’t,” Susan replied. After Heather’s birth, Susan says, Sonny paid child support, and Susan set up a nursery in her parents’ spare room in Iowa.
In the weeks that followed, Susan repeatedly rushed Heather to the ER, reporting that she had stopped breathing. No medical provider seems to have witnessed any such episodes. As Heather got older, Susan would bring her in with concerns that her blood sugar was fluctuating. But tests revealed nothing out of the ordinary. To most people, Heather seemed to be a reasonably healthy girl.
Many books and hundreds of reports on the subject of Munchausen by proxy have been written. Experts testify in court and host seminars in which they explain the warning signs to doctors and social workers. Typically, they say, women are more likely than men to exhibit MBP. A mother who engages in MBP is medically knowledgeable and reluctant to leave her child’s side. She is unusually calm when given terrible news or, conversely, abusive of the medical staff. She may flatter the doctors and be rude to the rest of the staff. She is overeager for treatments. She is the only one who seems to witness the child’s supposed episodes. She may have another child who has also suffered from a puzzling illness or even died.
As researchers studied more cases, they began to disagree about the most fundamental issues, such as whether the perpetrators were mentally ill or simply criminals and liars. Munchausen by proxy, some argue, is something one does, not something one has. “We assume people who commit suicide have some kind of mental illness but don’t assume that people who kill someone else have a mental illness, except maybe for antisocial personality disorder,” said Munchausen by proxy expert Marc D. Feldman, a clinical professor of psychiatry at the University of Alabama. “There is a kinship between suicidal patients and those who harm themselves—or get doctors to do it—in factitious disorder. There is also a kinship between homicidal patients and those who harm others in MBP. Thus, the former is a mental illness and the latter is not.”
But this is not a universally held opinion. “Factitious disorders have similarities to addictions, eating disorders, impulse control disorders, pedophilia, and some other established disorders related to both the persistence of the behavior and to the intentional efforts to conceal the disordered behavior,” says Brenda Bursch, a professor of clinical psychiatry and biobehavioral sciences and pediatrics at UCLA.
In the current edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, factitious disorder by proxy appears in an appendix along with other conditions that are being considered for future inclusion in the main body of the book as stand-alone disorders. The fifth edition of the manual, which will be released in 2012, will likely list factitious disorder by proxy as a formal psychiatric disorder. This shift is already a source of controversy.
“There was a four-hour conference call with a few experts from the U.S.,” Feldman told me. “I participated and I was the only one who had concerns about making factitious disorder by proxy a formal mental disorder. The rest felt that it would facilitate intervention with these mothers, perhaps improve the possibility of treatment. The majority ruled.”
By 2002 Susan had landed a job with an ambulance service when a one-night stand with a co-worker left her pregnant again. Daunted by the concept of another child, she decided to give the baby up for adoption and chose a nurse named Teri DeVine as the adoptive mother. A few months before the baby’s due date, DeVine became concerned with Susan’s behavior. At about week 22 of her pregnancy, Susan entered the hospital with a marginal abruption, which is when the edge of the placenta separates from the uterus, a condition that can cause preterm labor or fetal death. Susan said that a teenager at a water park had knocked her down, an event Susan’s mother confirms. But DeVine says Susan also told her and a nurse that she had jumped on a trampoline for twenty minutes. (Susan denies this.) “I was shocked,” DeVine told me. DeVine wondered if Susan meant to induce early labor, and her suspicions would only worsen with time.
Susan was put on bed rest, though according to trial testimony, she did not comply. She walked around the hospital and even chose to walk DeVine to her car when she came to visit. Susan says she was depressed and wonders who wouldn’t have been under similar circumstances. “I was stuck in a hospital without my oldest child, who I am going to go home to, and I’m going to give birth to this other baby that’s not going to be mine,” she told me. “It’s gonna be given to somebody else, and I’m putting all this work into this.”
When Amy was born, three months early, she weighed one pound eleven ounces. Susan took pity on the tiny creature she saw in the neonatal intensive care unit. Ultimately, she decided to keep the baby. Patricia, who says she didn’t want to enable Susan’s bad choices, told Susan she’d have to move out of the house. Soon Susan, Heather, and tiny Amy were living in a house in Iowa so small, Susan jokes, it could have been illuminated by a single night-light.
DeVine was heartbroken and disturbed. Birth mothers had broken agreements with her before. They had not, however, shown such instability. (According to DeVine, Susan also told her that she had consented to a do not resuscitate order for Amy, which nurses said wasn’t true.) DeVine wrote a letter to Iowa’s Department of Human Services warning that Susan might be a danger to her child. In February 2003 the state took Susan’s children away and conducted an investigation.
Truce T. Ordoña, a psychiatrist who was treating her, received a call about Susan from an agency working with the DHS. Troubled, he called her and set up a meeting. He asked her about reports that she had been using a birthing ball in her hospital room after doctors had ordered bed rest. He asked her whether she had declared a desire to induce labor so she could, in her words, “get back to my life.” Susan and her mother, who had shown up to support her daughter, answered all of his questions, countering every accusation. But Ordoña, who had never received Susan’s medical records despite urgent requests, was unable to draw any solid conclusions. The state did not have enough evidence to keep the girls and returned them to Susan within days. Susan assured Ordoña she would continue to see him, but after she got her kids back, she did not return to his office.
“He felt confident that Susan would not harm her children,” Patricia had said at the trial. “He felt confident it would be safe to place them back in her care.” But Ordoña, in his deposition, didn’t sound confident at all. “I made it very clear to [DHS] that I feared for the life of these two babies,” he said. “You know, you cannot make a competent decision in Munchausen by proxy if you don’t have a single medical record.”
Meanwhile, Susan says, Amy had started having medical problems; her apnea monitor’s alarm would go off and Amy would be blue when she found her. Patricia noticed problems as well. “She always sounded so gurgly,” Patricia said. Doctors told Susan that Amy had pneumonia or a chest cold and gave her antibiotics.
Weeks passed and concerns escalated. Susan told doctors that seven-month-old Amy was having problems with weight gain and chronic diarrhea, prompting questions about cystic fibrosis. In his trial testimony, Cox, the pediatrician who’d reviewed the records for the state, said doctors had been informed that members of Amy’s extended family had CF, though Susan says she has no idea where such information would have come from. Doctors looked at Amy’s DNA and chloride levels. The results ruled out cystic fibrosis.
In May Susan called an ambulance, reporting that Heather had dropped Amy from a height of three feet. EMS checked her out and thought she was fine. The next day, Susan brought her to the hospital complaining that her pupils were unequal. An evaluation showed that the right pupil was three millimeters in diameter while the left measured eight millimeters. But a head CT scan was normal, and a physical exam revealed no problems. Records noted that there was no explanation for the difference in pupil size other than someone’s putting medication in Amy’s eye that would cause dilation.
By the summer of 2003, nearly a year after Amy was born, Susan was pregnant again. Sonny, Heather’s father, was the father of this child as well, and though he briefly moved in with the family, he ultimately chose not to be a part of her life either. Though Susan knew raising three girls by herself would be hard, this time she didn’t consider giving the child up for adoption. Beth was going to be “the third pea in the pod,” she said.
Beth was born in January 2004, three months premature. She weighed two pounds and, like Susan’s other girls, had problems. “I had talked to a pediatric neonatal surgeon who was possibly going to do surgery on her, and [he said] she might have to have a colostomy bag,” Susan told me. Like Heather, Beth was later brought to the hospital with concerns about her blood sugar levels.
As Susan tried to keep up with the demands of three little girls, she realized she needed to be closer to her mother. In the summer of 2004 she packed her belongings and moved her young family into a house in Ennis, where Patricia and Brian had recently relocated. Hospitals in Iowa that had become familiar with Susan and her children never saw them again.
Like most working people, doctors like happy customers. No customer is unhappier than a parent who disapproves of his or her child’s treatment. These days, when hypervigilance is the norm, parents often attempt to diagnose their child before they even enter the doctor’s office, scouring the Internet for worst-case scenarios. (Is that wheezing a result of allergies or some horrible respiratory disease? Is my child excitable or does he have ADHD?) At the end of a consultation, parents tend not to wait and see if their child’s symptoms will get better on their own. They want a diagnosis and a drug that will fix the problem right away.
It may be tempting to suspect anxious parents as MBP candidates when a child is repeatedly brought in with puzzling symptoms. But leaping to that conclusion carries risks. “What if it’s something rare and you say it’s MBP?” said James Lukefahr, a child abuse pediatrician and professor of pediatrics at the University of Texas Health Science Center at San Antonio. “Is someone going to come along and say, ‘You’re too stupid to see that it’s this rare condition’?”
Lukefahr says he has found the classic Munchausen by proxy profile helpful in cases he has encountered. But there was one exceptional case that has stuck in his mind. “In every way, the mother was acting like a parent who was engaging in Munchausen by proxy,” Lukefahr said. “She had all the personality characteristics. She loved to suck up to doctors. She was insistent that things be done her way: this test, that test. She had a shopping list of procedures she wanted done.”
As it turned out, the child was diagnosed with a rare, terminal condition that typically causes death within the first few months of life. The mother may have had personality issues, but when it came to her child’s care, she was right. “Her absolute fixation on his treatment was keeping him alive,” Lukefahr said.
As might have been predicted, Munchausen by proxy is so strange and difficult to prove that some parents have been falsely accused of it, and critics have emerged. A group called Mothers Against Munchausen Syndrome by Proxy Allegations (MAMA) states on its Web site, “Every parent who is seriously advocating for their child is in imminent danger of this cruel and ridiculous allegation!” MAMA notes that in a few cases Roy Meadow has given crucial court testimony that convinced juries of the perpetrator’s guilt, only to see the convictions overturned in later rulings. Munchausen by proxy skeptics generally acknowledge that medical abuse takes place but suggest that introducing unproved psychological speculations blurs the diagnostic process and can paint an overzealous parent as a criminal.
But even when the evidence is incontrovertible that a parent has falsified a child’s medical history or lab test, some doctors hesitate to contact the authorities, fearful of the risk of litigation and malpractice. It’s much easier to refer the patient to another doctor than deal with investigations, custody trials, and, sometimes, criminal trials.
Just how often the authorities are contacted or how many cases are confirmed each year is difficult to determine. Munchausen expert Marc Feldman puts the number of cases between 600 and 1,200 in the U.S. alone, though he acknowledges it could be higher. There is no tracking system, and the terminology is so variable that an accurate study is nearly impossible. A Munchausen by proxy case in one doctor’s office could be defined as physical abuse in another.
With roughly 10 percent of the publicly reported cases ending in a child’s death, doctors have to be alert. Finding that they have been duped doesn’t just make them out to be fools; it makes them unwitting participants in child abuse. Without evidence that a perpetrator has been falsifying symptoms or test results, pediatricians must assume the reports are true. And as technology has expanded so has overtreatment. There is always one more test that can be done and one more dose that can be increased, until the proposed cure becomes a major problem.
According to trial testimony, Susan’s stories continued to contradict reality after she moved to Texas. Susan told three different hospitals that Beth would need a liver transplant, but doctors who had looked into Beth’s liver problems felt the issue was associated with her premature birth and would go away on its own. Susan reported that Amy had cerebral palsy, though no record of such a diagnosis could be found.
Some of Susan’s claims resulted in unnecessary, distressing tests. In the fall of 2004, Susan told staff at the Children’s Medical Center in Dallas that nine-month-old Beth was constipated and had bloody stools. To evaluate concerns of intussusception, in which the bowels telescope onto each other, the infant received an air contrast enema, an uncomfortable procedure performed without anesthesia in which a tube is inserted into the rectum and the bowels are inflated while being X-rayed. In cases of a true intussusception, the air can push the bowel back into place. No intussusception was observed. Yet three weeks later Susan took Beth to Medical City Hospital in Dallas. Based on vomiting symptoms and the fact that Susan reported a history of intussusception, doctors conducted a second air contrast enema. Again, it was negative.
In May 2005 Amy was taken in for a sweat test at Children’s Medical Center in Dallas to see if she had cystic fibrosis. Though the Iowa doctors who had conducted genetic testing found no disease-causing abnormalities and had deemed her sweat tests normal, Susan told Dallas doctors the opposite. Because of this misreporting, doctors probably weren’t surprised when Amy’s chloride levels registered high.
No one has ever conclusively explained these different test results. Even if someone had attempted to falsify the results by pouring salt on Amy’s arm prior to the test, the area would have been cleaned right before the equipment was attached. The medical personnel performing the test does, though, typically exit the room for thirty minutes while a tiny disc collects sweat from the skin, leaving time and opportunity for tampering. If the child is very young, another adult would normally be present throughout. In this case, according to the DFPS lawyer at Susan’s custody trial, there is no record of who was in the room with Amy.
Susan says she was devastated by the test results. Cystic fibrosis is a terminal illness, and Amy was prescribed medications for her lungs and gastrointestinal system, power suctioning from her nasal passages, and a vibrating vest that would help mobilize the mucus overproduced in the lungs. Still, the conclusion made sense to Susan. “I really didn’t know much about cystic fibrosis,” she said. “I just knew that it was a respiratory problem, and when they’re telling you these things, you’re like, ‘Oh, well, that does make sense. Okay, yeah, she sounds kind of wet in her lungs, and the breathing treatments that they’ve got her on are for cystic fibrosis and they seem to be working, so okay. Well, now we’ve got an answer.’”
In October 2005 Child Protective Services in Texas received its first complaint about Susan’s behavior. Over the course of the investigation, which continued until February 2007, more than a dozen people called the hotline, questioning the constant medical treatment the girls were receiving. But since federal law restricts access to records and because Susan went to numerous hospitals, it was difficult to put the pieces together.
Soon after the initial call came in, a CPS investigator, Katherine Jones, visited Susan. At their first meeting, Susan painted a portrait of a very fragile family. Amy had breathing problems, cystic fibrosis, and a broken leg, and a doctor was concerned that she may have osteoporosis caused by the steroids she was taking for her bronchial treatments. Susan expressed concern that Beth might have cystic fibrosis as well and insisted she was also suffering from a seizure disorder, cerebral palsy, and hearing loss. In addition, according to Cox’s testimony about the medical records, Susan requested that doctors surgically implant a feeding tube into Beth’s stomach called a gastronomy button, or G-button, which helps a person who has trouble eating. The food is then administered directly into the stomach, bypassing the throat and esophagus. Doctors agreed to the surgery and also performed a fundoplication, in which the lower portion of the esophagus is wrapped around the top of the stomach so that even though the patient may feel nauseated, she cannot vomit.
After the surgery, Beth was prescribed a wheelchair. Then Susan started reporting more concerns about Beth’s seizures. From late 2005 through 2006, Beth was put on anti-seizure medications, which can affect alertness, IQ, and breathing. By September 2006 Beth had been diagnosed as having cerebral palsy, seizures, and developmental delay. In December 2006, when Cook Children’s Hospital hooked Beth up to an EEG to measure seizure activity, Susan was asked to hit a call button so that doctors could correlate her observations with Beth’s brain wave patterns. Susan pushed the button five times. Doctors saw one abnormal reading that could have been caused by Beth’s antiseizure medication but no definite seizures.
While Jones requested and gathered records from more than twenty physicians, clinics, and hospitals, Beth’s and Amy’s level of care escalated. An investigator claimed that the two girls each had eight to twelve hours of home health care nursing every day. One of Beth’s nurses, Jodina Bowers, testified during the trial that she didn’t think the girls needed much medical care. Bowers was concerned when she attended a doctor’s appointment for Beth and heard Susan misreport a previous doctor’s conclusions. Sometimes when Bowers would return after a weekend off, the remaining dosages of phenobarbital weren’t consistent with the scheduled amounts. This would be alarming, since unsupervised variations in dosage could lead to seizures. Once, she testified, when she asked about the discrepancy, Susan said that it wasn’t anybody’s business. Though Bowers said that her assignment was to attend to the children’s medical problems—and testified that she may have witnessed Beth having a slight seizure—she mostly compared her work at the Hyde household to a babysitter’s.
By late 2006 Susan, who was now working as a paramedic at Cook Children’s, was telling doctors that Beth had symptoms consistent with cystic fibrosis. The results of her two sweat tests were high. But oddly, they were dramatically different. The first test was elevated; the second read so far off the scale the human body could not have been the sole source of the chloride. (Susan says she was not present during the tests, as she was working at the time, though she did work at the same hospital where the tests were performed.)
Roughly a year and a half after Texas CPS received its first complaint on Susan Hyde, Jones was still contacting people and gathering information about the case. But she knew she had to make a decision: She was told that Amy was being assessed for G-button surgery as well. (Susan says that although she was watching Amy to make sure she gained weight, she never considered G-button surgery for her.) In March 2007 CPS took the girls. “They just called and told me that they had taken the kids already,” Susan said. “I was pretty distraught. And of course I called my attorney right away to get over to the house.”
For the state’s case, the medical moment of truth had arrived. Soon after the girls were taken into custody, Beth, now three years old, complained of a sore throat, and the foster care provider took her to see Kimberly Sweet, a pediatrician with Baylor Family Medical Center at Ellis County. Based on the list of medications in Beth’s file, Sweet testified that she was expecting a sickly child. But Beth walked around the office and had no problem talking and following commands. The foster care provider said Beth ate well by mouth several times a day. She hadn’t had any seizures other than an episode that may have simply been an attempt to vomit after experiencing acid reflux. A later evaluation reported that she had normal hearing. Beth did appear to have some visual and fine-motor-skill delays and, perhaps, mild cerebral palsy, but she was otherwise a healthy girl.
Within weeks of Beth’s first visit, Sweet ordered the G-button removed. She requested discontinuation of the wheelchair. She weaned Beth off the medications, including the antiseizure meds phenobarbital and Klonopin. By the time of the June 2008 custody trial, the only medications she was prescribing were Prevacid for acid reflux and Claritin for allergies.
Sweet also saw Amy. The four-year-old’s oxygen levels were normal, and she had no signs of respiratory distress. Sweet eventually discontinued the breathing treatments and all other medications except Claritin. Sweet kept seven-year-old Heather, who considered herself “the healthy one,” on Adderall for ADHD.
But the most astonishing moment for the doctors was when they repeated the sweat tests on Amy and Beth, this time certain that Susan was not present. Both results were normal.
Susan and her mother had mixed emotions about the news. “I was happy they didn’t have cystic fibrosis,” Susan told me. “But in the same sense, what did they have that whole time?”
“My first comment,” says Patricia, “was ‘Oh, my God, they’re going to live long lives.’ And my next comment was ‘Oh, my God, this is bad for Susan.’”
She was right. When Susan’s 2008 custody trial began, DFPS lawyer Sara Ruth Spector had amassed more than twenty boxes of documents. Cox testified, “The escalation among the three children is where I was most concerned and why I thought this was the worst [case] that I had seen.”
Susan had her defenders. Her sister testified that she had once seen Beth have a seizure. Patricia said that her daughter didn’t mean to hurt the children. “I believe that she had exaggerated and falsified—I mean, exaggerated some medical history,” Patricia testified. “I don’t think she intentionally did it. . . . I believe she’s very ill. I’m not sure she realizes that she’s done this.” A psychiatrist told the jury he believed Susan was bipolar and that her disorder could have caused her strange behavior. He didn’t believe she was a factitious disorder by proxy perpetrator, and he said he had seen improvement since he gave her medication to address her bipolar condition.
During her defense, Susan said that she hoped to treat her bipolar illness and get her children back. But her testimony likely didn’t impress the jury. She pleaded the Fifth when asked if she had ever given false medical histories of her children to health care providers. She pleaded the Fifth when asked if she had ever witnessed Beth having a seizure. When asked how she would explain Beth’s and Amy’s anomalous sweat tests, she again pleaded the Fifth. Spector raised the question of whether Susan had Munchausen syndrome, in addition to Munchausen by proxy. Doctors testified about Susan’s own medical history, which included a mysterious stab wound to her abdomen.
Reflecting on the verdict, Susan told me, “It would have been a long shot to get the kids to come straight home with me. But by all means they should have ended up at my parents’ house.” In the end, however, the jury gave the Department of Family and Protective Services custody of Heather and Beth; Amy was released to her biological father.
Susan and her mother were dumbfounded. They tried to imagine a life without the girls. No more bedtime songs. No more birthday parties. Heather, Susan later said, would surely try to “keep our spirit alive” in Beth. “But they will brainwash them. I can’t imagine the things they’re telling them about us.”
Susan believes to this day that she didn’t harm her girls with unnecessary medical treatments. If doctors were so concerned about the health of her children, she said, they could have changed the plan of care. They didn’t, and Susan and her mother believe that if CPS had just waited, the investigators would have seen that in Susan’s care the girls were already on the fast track to healthy lives. Before CPS took the girls into foster care, in March 2007, Amy was going to be taken off her breathing treatments. Beth’s G-button was going to be removed after the flu season. “Those were the biggest mutilations that you did,” Patricia said.
“It’s not mutilation, though!” Susan said.
“But the prosecutor said to the jury that you mutilated them.”
“I know, but it’s not mutilation!” Susan said. “I didn’t hold a gun to that doctor’s head! I didn’t do the procedure!”
For the moment, Susan was adamant, her conviction strong. She was not going to take all the blame. “I think they’re responsible for what they do, but they didn’t back what they did,” she said of the doctors. “Now they want to turn it all back on me and say, ‘It’s all your fault’? Wrong.”
She had been sick, she admitted, and now she was getting better. She discussed the appeal she has filed and her hopes that she will get her kids back once she has gotten her bipolar disorder under control. “Of course I want my kids,” she said. “But I don’t want them to come home with me, because I can’t take care of them right now. I know I have my own limitations that need to be dealt with.” Until then, she thinks her children belong with her parents.
“I will have to be in counseling at some point in time for the rest of my life,” she said as a tear rolled down her face. “I understand and accept that. It’s an illness. But for somebody to sit back and say that it can’t be treated? They’re so wrong. Just about anything can be treated.”