Munchausen By Proxy Syndrome


Vol. 15 •Issue 4 • Page 18
Munchausen By Proxy Syndrome

Subtle Forms of Maltreatment Not Always Detected

SAN ANTONIO—Child abuse in any form is tragic. In most instances, there are tell-tale signs like bruises, cigarette burns or broken bones. In the best-case scenarios, the abuse is not life-threatening and caregivers can summon outside help, typically from social service agencies. Sometimes the abuse is so subtle it defies detection. One such type of abuse—Munchausen by Proxy Syndrome (MBPS)—was discussed at the AARC International Congress here last fall.

Make no mistake. Like any form of abuse, MBPS can be as lethal as a situation where an agitated mother throws her newborn off a balcony or abandons it in a dumpster.

In MBPS, a parent makes up symptoms of an illness or will do something to intentionally make the child ill and schedules the child for a medical appointment. The pattern of abuse begins when caregivers start diagnostic tests. These generally start out fairly benign, but many become increasingly invasive as persistent reports are made. Typically the parent is attempting to gain attention by using an imagined sick child as a cry for help.

The term Munchausen is relatively new and derives from Roy Meadow’s adoption of the term in 1977. Munchausen Syndrome in adults has been used since 1951. The term Munchausen is based on an earlier story about Baron Von Friedrich Munchausen, a German soldier who recounted grossly exaggerated stories about his travels as a soldier, hunter and sportsman in the 1700s. Proxy indicates the parent is standing in for the child in reporting the symptoms.

Typically the parent who claims the child is having these symptoms is a mother, explained Diane Roberts, a social worker at MetroHealth Medical Center in Cleveland. “Only a few incidences included the fathers, but the dynamics are the exact same.”

FIRST EXPOSURE

Robert’s first exposure to MBPS involved a four-month-old girl who was brought to the hospital for evaluations for symptoms of seizures and apnea in the late 1980s. One week prior to the infant’s initial hospital visit, the infant had spent two days in another hospital for observation. By that time, the mother had already rushed the infant to an ER on three separate occasions and had taken the girl to her physician’s office. All medical evaluations and tests were negative, despite the mother’s reports the baby was having daily apnea spells and shaking in her extremities.

MetroHealth admitted the child who was examined and underwent a CT scan and an EEG, all of which were normal. She was discharged a day later, but the mother brought the girl back three days later, reporting the same episodes of apnea. At that point, the physician ordered a seizure medication for the child and sent her home. Two days later, the mother reported her daughter still exhibited the same symptoms. Munchausen was first mentioned at that point.

Caregivers reviewed the situation but concluded the child and mother did not meet the criteria for MBPS. The case did not end there. When the girl was five months old, she was rushed to the hospital again. This time she spent a month and a half in the hospital. Again, all tests were negative, while the mother repeatedly called the situation “life threatening.” Based on the mother’s accounts, doctors felt it was totally unsafe to send the girl home.

In the hospital, the youngster continued to have episodes in front of the mother only, each one causing the mother to run out of the room screaming for help.

These episodes went on for a few more months. Then the mother became pregnant with her third child. Just as soon as the third child, a girl, was born, she exhibited the same seizure and apnea symptoms reported in the older sister. Surprisingly, the symptoms completely disappeared from the elder girl.

ANOTHER CASE

The third baby’s symptoms were more severe, according to the mother’s reports. The infant spent most of her first year in the hospital, eventually went home on a trach and from there was sent to a children’s rehab hospital where she stayed for three months. She died at home when she was three. Her mother reported she aspirated on her bottle in her crib when she was alone. Following an autopsy, the death was classified as SIDS.

By that time, the family’s doctor was positive he had encountered a family with a rare disease and he was determined he would eventually discover the cause, Roberts reported.

The woman’s fourth child was named after the physician, and when he left for a vacation, Roberts discussed the case with a new hospital pulmonologist. Together they told the family a continuation of their previous behavior would not be tolerated any longer.

“The first time the child was brought in with a story of seizures or apnea, we immediately called the Department of Children and Family Services (DCFS) and pushed for them to take custody of the kids,” Roberts said. At that juncture, the family jumped ship and went to another hospital. DCFS continued to follow and the new baby’s symptoms disappeared.

There is rarely real proof for Munchausen; there is just a list of suspicions, Roberts suggested, and it can be a time-consuming process. Criteria include: unexplained, persistent or recurrent illnesses that do not respond to treatment. Typically, treatment is giving the child seizure medications and the mother reports the child is still having seizures.

The abuse in such cases does not generally cause a death. It is what medical professionals do to these children, the tests and the time spent at the hospital that causes the problem, Roberts said. The proof that a case is probably MBPS relies on discrepancies between clinical findings and signs and symptoms parents claim to have witnessed. The two do not measure up.

PLAYING WITH THE SYSTEM

“Parents become more and more sophisticated, and as they get good at this, they can tell you very accurate symptoms and reports of what the symptoms should look like,” Roberts said. At the same time, there is generally a pattern developing.

“Typically the signs and symptoms do not occur outside the mother’s presence. When the mom or suspected perpetrator is not there, the children are fine. They are perfectly healthy and normal. That is a huge red flag to watch for,” Roberts said.

Also, the mothers are overly attentive and seem to live and live to be at the hospital. In the case study above, “the mother did not seem to be as worried about the child’s illness as the staff. It was all about ‘Oh good, I have something to report,’” Roberts said.

In a typical MBPS case, “there is urgency in the parent’s tone, hinting that their child might die if the symptom occurs again,” Roberts explained. “This plea really appeals to health care professionals to do something to help them. Parents say, ‘I know you will find something and help my child,’ and as health care professionals they want to help the child and see that nothing happens.”

In MBPS cases, the parents are rigid in claiming their child is very ill, and they demand more tests. “This is not a normal act,” Roberts suggested. “Normally parents have to be talked into doing more tests on the child, especially if the test is invasive. If the doctors refuse to do more tests, the parents will go to another hospital. That is why Munchausen is difficult to diagnose.”

HARD-TO-SPOT CASES

Common problems like seizures and asthma are the most difficult to track. “They rely totally on family reports and are hard to test if the patient did have them or not.” Other common symptoms reported include bleeding or vomiting, the latter sometimes caused by a parent adding something to the child’s food.

In about 75 percent of the cases, parents were making their child have symptom by actions such as putting their hands over their mouths.

It is relatively easy to fake other symptoms. Blood can be smeared on a child’s diaper or face. Sometimes this is the mother’s blood, but some people have used red food coloring. Parents have even injected materials into their child to cause fevers or given laxatives to cause diarrhea. “We once had a child who had learned to vomit,” Roberts said.

On a sad note, the mortality rate is about 9 percent for children who are victims of this form of child abuse. “This rate is extremely high for a form of child abuse,” Roberts said. The sibling mortality rate is also 9 percent. “This tells you that even if you focus on one child, another child is just as much at risk as the targeted child,” she pointed out.

As a result of the reported instances of MBPS, caregivers are now looking more carefully at prevention. As part of the changes taking place, it is extremely difficult today to have a crib death ruled as SIDS if there has not been a complete review of the medical history and review of the home.

As short a time as four years ago, SIDS rulings were based only on autopsy reports. Today that has changed. Now all cases of SIDS in Ohio and various other states are also being investigated by law enforcement agencies at the time of death.

In SIDS cases, it is impossible to determine by autopsy whether a child under the age of three died accidentally, Roberts said. “A child could be suffocated and there would be absolutely no physical evidence on that child’s body,” Roberts said. As a result of changes in the law, SIDS rates have gone down 50 percent in Ohio’s Cuyahoga County.

Coroners formerly ruled SIDS for any unexplained death of a baby. Now there is a police investigation coupled with an interview of the parents, an inspection of medical records and a probe of primary health care. These must all be reviewed now before a coroner can place a cause of death on a certificate.

ROCKY ROADS

Rocky family relationships can sometimes lead to MBPS. Roberts recounted one case of a volatile husband and wife who frequently fought. The parents would fight, the child would have an episode and end up in the hospital and the parents would be there together. “It was the mother’s way to get them back together, and they would appear as a united front,” Roberts said.

Roberts discussed another child who was repeatedly hospitalized and eventually put into foster care. When working with an art therapist, the youngster drew pictures of her mother putting something into her IV. This story has a happier ending. Roberts said the mother completed parenting classes and therapy and the child was returned to her. The mother never confessed she had given something to her little girl, however.

To get a better handle on some situations, some hospitals have attempted to monitor rooms of a suspected Munchausen case. The difficulty with videotaping is it invades privacy and leads to ethical questions of how soon a caregiver can intervene on the behalf of the child. “This puts health care professionals in a very difficult position,” Roberts said.

Rainbow Babies and Children’s Hospital, also in Cleveland, has a hidden video surveillance exam room available when trying to make a determination of MBPS.

“The room is available on an as-needed basis,” said Darlynn Constant, LISW, Child Protection Coordinator.

Rainbow Babies and Children’s Hospital established policies and procedures with clearly defined roles in the management of suspected MBPS. “As we prepared to use a room like this, we worked with Child Protective Services and the police in the event we suspected a case of child abuse. We made sure our procedures were necessary and as ethically correct as possible,” she explained.

“We don’t expect to use it a lot and must carefully determine when it is appropriate to use the room equipped with a hidden video surveillance camera. There is not a less invasive way to determine Munchausen. It is hard in any Munchausen case to prove it. We are a medical facility and the room is designed to facilitate a clinical diagnosis,” Constant said.

Other hospitals have found few other ways to determine MBPS, other than through video surveillance.

Rainbow Babies and Children’s will use the room only after other possible diagnoses have been ruled out. “When you use video surveillance, you need a good system of coordination in the hospital and outside of the hospital,” Constant explained. “We want to minimize intrusion of the families, staff members and visitors who don’t know about the hidden surveillance.”

While few caregivers like to play detective, sometimes they are forced to tread in murky waters. They do have a responsibility to look out for the welfare of those who cannot protect themselves from abuse.

Caroline Crispino can be reached at [email protected].