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?

by Katy Vine

January 2010

(Page 3 of 4)

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.’”

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