The SIDS Diagnosis
The SIDS Diagnosis
The SIDS Diagnosis
One of the most tragic aspects of sudden infant death syndrome is that by the time it is diagnosed, the baby has already died. There is no way to diagnose it when a baby is still alive. Equally tragic is that SIDS cannot be prevented. Even parents who take all the recommended precautions to reduce risk may still lose babies to SIDS. When it is finally diagnosed, it is because all other possible causes of death have been ruled out, as the AAP explains: “A diagnosis of SIDS reflects the clear admission by medical professionals that an infant's death remains completely unexplained.”36 Actually, a diagnosis of SIDS is not a diagnosis at all, but rather the absence of one. Because of that, it is often called a diagnosis of exclusion.
Before SIDS is diagnosed, an investigation usually takes place. One essential component is a thorough examination of the death scene by law enforcement officials. Although these visits and the questions that are asked can be painful for grieving parents, this step is crucial in order to diagnose the death correctly. Investigators initially call the death a sudden, unexplained infant death (SUID). The Federal Bureau of Investigation (FBI) recommends that a SUID be treated like any other mysterious death.
FBI agent Ernst H. Weyand explains: “A meticulous investigation must begin immediately to determine if criminal behavior caused or contributed to the death of a child… . [W]ithout a complete investigation, the circumstances surrounding a baby's death will remain a mystery.”37
Weyand says that officers should be dispatched immediately to the hospital or other location where the baby was pronounced dead, as well as visit the location where the baby was first discovered. At the hospital, investigators examine the body and take photographs. At the location where the infant was found, officers often collect physical evidence such as the baby's clothing, bedding, formula, prescription or over-the-counter drugs or medications, and any toys that were located near the baby. The officers interview family members or other caregivers and then document their findings. They record observations about the general cleanliness of the home, the number of people living there, and what the baby's sleeping surface was like. They ask questions such as whether an adult was sleeping with the baby at the time of death, and if the person was impaired by drugs or alcohol. Another important aspect of the investigation is a review of the infant's medical history. Officers gather information about the baby's last doctor's visit, immunizations and when they were given, and whether the baby has ever been hospitalized or received emergency room attention. The family's case history is also carefully reviewed. For instance, investigators need to know about any suspicious childhood accidents or child abuse and whether other unexpected infant deaths have occurred in the same family. They also ask whether anyone in the house smokes, how the home is heated and ventilated, and what went on in the house during the hours before the baby was found.
The autopsy, performed by pathologists or other skilled medical professionals, is also essential in order to properly diagnose why an infant died. They lay the baby on a table for an external examination, noting factors such as the color and condition of the eyes, fingernails, arms, legs, and head. They also make notations about the color of the skin and whether marks, bruises, or signs of abuse or trauma are evident. They take
blood and fluid samples to check for any harmful substances that could have contributed toward the death. According to the AAP, this is a crucial part of the autopsy because it is the only way to know if a baby was poisoned, either deliberately or accidentally. One review cited by the AAP showed that seventeen out of forty-three infants who unexpectedly died before two days of age were found to have cocaine in their bloodstream.
The internal exam begins once the external exam has been completed. Pathologists examine and photograph vital organs and tissues to look for possible medical problems that were not evident when the baby was alive. Start to finish, the autopsy can take three or four hours. But it can take a very long time before the results are compiled, a diagnosis is made, and parents receive the death certificate. In some areas, medical examiners do their best to keep parents informed and provide them with a preliminary autopsy report within a few days. This is not true everywhere, though. Some coroners will not offer any information about the possible cause of death until all tests are in and have been reviewed by pathologists. In some cases, coroners refuse to discuss the infant's death or autopsy findings with the parents at all. Meta Dupuis, whose six-month-old son died of SIDS in March 1997, waited in a coroner's office for eight hours, and he refused to see her. Seven months passed before she received her son's death certificate.
The only way SIDS can be diagnosed is by performing an autopsy—but in some cases, the autopsy is wrong. In the January 2005 issue of the Journal of Clinical Microbiology, researchers wrote about an eleven-week-old boy from Finland who died unexpectedly in January 2002. The baby had been healthy and was developing normally, and pathologists who did the autopsy said he had died of SIDS. But further investigation showed that they were not correct. The baby had actually died of infant botulism, which is caused by botulinum, the most poisonous natural substance that exists. Botulism often occurs when an infant has been fed natural honey, even when a small amount of honey is used to sweeten a pacifier. In this baby's case, however, the botulism was not caused by honey. The baby died because of botulinum spores found in common household dust.
Many coroners, police officers, and medical professionals are sensitive toward grieving parents who have suddenly lost a child. They have a job to do, and that job is important. But they also know the parents are human beings who have just suffered a terrible, unthinkable loss. As the AAP writes:
Most sudden infant deaths occur at home. Parents are shocked, bewildered, and distressed. Parents who are innocent of blame in their child's death often feel responsible nonetheless and imagine ways in which they might have contributed to or prevented the tragedy. The appropriate professional response to any child death must be compassionate, empathic, supportive, and nonaccusatory… . It is important for those in contact with parents during this time to be supportive while at the same time conducting a thorough investigation.38
Unfortunately, compassion and support were not what Darlene Buth and her husband experienced after the SIDS death of their four-month-old son Peter James (PJ). On October 3, 1995, Buth received an emergency phone call at work telling her that she needed to go home immediately. When she arrived, she saw a police officer standing in front of her house. She asked what had happened but he would not answer her. He simply told her to go inside. Nothing could have prepared her for what happened next. She learned that her husband had left the baby on the couch for a brief time. When he returned to the room, PJ's skin was a bluish color and he was not breathing. His father had called 911, and an ambulance rushed the baby to the hospital. When the Buths arrived, nurses ushered them into a small room and told them the pediatrician would be in to speak with them. The doctor walked in and said that he had done everything he could, but their son had died. “I just wanted to scream out, this isn't fair!” Darlene writes. “You can't take my little boy away from me!”39 She and her husband went into an examination room where PJ was lying in a little crib. Darlene sat in a rocking chair and a nurse placed the baby in her arms. “They told us to say our good-byes,” she says, “and all I could think of is, How do you say goodbye to your baby?”40
The Buths did not realize it at the time, but that was only the beginning of their nightmare. They returned home, shocked and numb, and were greeted at the door by police officers and social service workers. Darlene and her husband were instructed to go into different rooms so they could be interviewed separately. She was asked questions such as “How does your husband treat the children?” and “What kind of temper does your husband
have?” She was also asked, “Has he ever lost his temper? Is he violent? Do you feel safe with him? Do you feel that the children are safe?” Darlene could not believe that she was being
scrutinized in this way mere hours after her baby boy had died. “I just couldn't understand what they were trying to do,” she writes. “Where was the compassion? The caring? Where were the kind words? Why were they treating us this way? What did we do?”41
The Buths learned that because they had taken out life insurance policies on their children, they were suspected of murdering PJ in order to collect insurance money. They were stunned at the idea that they could be accused of something so terrible. Later they received the baby's autopsy report, which ruled his death as SIDS. After finding out what they had gone through, PJ's pediatrician called the police station. He said that he knew the family well, that they had no history of child abuse, and no foul play whatsoever had been involved in the baby's death. He added that the police were compounding the Buths' grief by unjustly hounding them. Darlene describes how she and her husband suffered through the investigation: “To be accused of killing our own child is something that I will never forget or understand. We loved our baby dearly and would do anything to bring him back… . Why do these people treat parents with so much contempt? If all their questioning is part of their job, why can't they figure out a better way of doing it? SIDS is a very tragic, painful experience, so why do they add to the pain?”42
What happened to the Buths was unfortunate because they were not found responsible for their son's death. But sometimes investigators learn that parents are to blame for the death of a baby, through either negligence or deliberate acts. The AAP states that although it happens in less than 5 percent of all infant deaths, fatal child abuse has been mistaken for SIDS. According to a study by Scripps Howard News Service, states that aggressively investigate infant deaths are finding twice as many homicides (known as infanticides) as states that do a cursory job of investigating the deaths. The study found that Arizona leads the country in detecting infant homicides, while Idaho has no formal review process for the deaths of children.
When Parents Kill
Law enforcement professionals often say that infanticide is difficult to detect. It is virtually impossible, for instance, for pathologists to tell the difference between babies who have been smothered and babies who have died of SIDS. One particularly disturbing fact is that some babies die because a parent, usually a mother, has a disorder known as Munchausen syndrome by proxy (MSP). A parent with MSP fabricates symptoms in his or her baby, thus subjecting the child to unnecessary medical tests and/or surgical procedures. Typically, an MSP parent takes the baby to a medical facility and makes up a history of apparent life-threatening events in order to deceive medical personnel. Then, after the baby has been smothered or killed another way, the MSP parent has a recorded history of being devoted and caring. Unless law enforcement officers have a specific reason to be suspicious, the killer may unfortunately never be found out.
As a result, the reporting of infanticides in Idaho is at least 14 percent below the national average.
One parent who committed infanticide was Kathleen Folbigg, a woman from Australia. On March 1, 1999, Folbigg reportedly found her nineteen-month-old daughter Laura in her bed, pale and cold with bluish-colored lips. She picked the baby up and rushed into the kitchen to call an ambulance. When the emergency team arrived, they found Folbigg sobbing as she performed cardiopulmonary resuscitation, or CPR, on her daughter. Laura was not breathing and paramedics could find no pulse. Later at the hospital, she was pronounced dead. During the autopsy the pathologist could find no apparent cause of death. But because of Laura's age, he believed she was too old to have died of SIDS. Instead, he ruled the death “undetermined” and ordered a police investigation. Detective Sergeant Bernard Ryan was assigned to the case. He began by interviewing Folbigg and her husband, Craig, and what he learned was shocking—Laura was the fourth of the Folbigg's children to have died unexpectedly. Their son Caleb had died at the age of twenty weeks. Another son, Patrick, had died when he was four months old. A daughter, Sarah, had died when she was eleven months old. In each of the cases, the children had been healthy and happy before they died, and their deaths were all ruled to be due to natural causes.
After Laura's death, Folbigg separated from her husband and moved out of their house. She left many possessions behind, including one of her diaries. One day as Craig Folbigg was doing some cleaning he found the diary and began to read it—and what he read, he later said, “made him want to vomit.”43 His wife had described in great detail her depression after each child's birth, and she said that she felt she was losing control. In one particularly revealing entry she wrote: “I feel like the worst mother on this earth. Scared that she [Laura] will leave me now. Like Sarah did. I knew I was short-tempered and cruel sometimes to her and she left. With a bit of help.”44 But the most chilling of all her writings detailed a terrible secret from her past. When she was eighteen months old, her father had stabbed her mother to death outside their home. On October 14, 1996, after three of her children had been found dead, Folbigg wrote the following: “Obviously I am my father's daughter.”45 Once Craig Folbigg realized what his wife had done, he turned the diary over to the police.
Ryan spent two years collecting evidence and assembling a case that he believed would result in Kathleen Folbigg's murder conviction. On April 19, 2001, police arrested her at her home, took her into custody, and charged her with four counts of murder. At her hearing, prosecutors claimed that she had deliberately smothered her children to death, and they produced the diary as the most incriminating evidence. They also presented a statement from forensic pathologist Janice Ophoven who said that the chances of all four children dying of SIDS “were a trillion to one.”46 Folbigg's trial lasted for seven weeks. On May 21, 2003, the jury of the Supreme Court of New South Wales found her guilty of killing her four children. The following August she was sentenced to forty years in prison.
Folbigg's case was highly unusual because whenever more than one infant death occurs in a family, police typically launch an investigation right away. Child abuse fatalities are very rare, though, and the cause of a sudden, unexpected infant death is often ruled to be SIDS because no official cause can be found. But in many cases, babies who actually die from suffocation are incorrectly diagnosed as dying from SIDS. Medical professionals often say that the two are very easily confused. “It is far more common for a child to die of asphyxiation than to die of SIDS,” says Andrea Minyard, a medical examiner in Pensacola, Florida. “We say this with a heavy heart. But it is an accurate portrayal of what really is happening.”47
A Scripps Howard study found that most coroners throughout the United States do not follow the CDC's standardized guidelines for death investigations. The guidelines call for an investigation of the death scene, performance of a complete autopsy, and review of the child's and family's medical history. There is, however, no federal legislation that mandates how infant deaths are investigated. Nearly all states have statutes re-
quiring that a death investigation occur in cases of sudden, unexpected death, but the actual performance of these investigations varies widely from state to state, and even city to city. In some cases, the investigations may be done sloppily or may not take place at all. Thus, SIDS ends up as the diagnosis when the real cause of death is overlooked.
Another finding of the study is that eleven coroners who were adhering to federal guidelines when examining infant deaths in their communities found that 72 percent of the deaths were due to suffocation. In one Michigan county, nearly 90 percent of the fifty-eight babies whose deaths were investigated had been suffocated. On the opposite end of the spectrum, some communities reported low or no incidents of suffocation and had very high rates of deaths attributed to SIDS. In Omaha, Nebraska, for example, where sixty infants died unexpectedly over a five-year period, more than 90 percent were ruled to be SIDS deaths. Tom Haynes, Omaha's corner, says it can be difficult to prove that a baby's death was caused by smothering rather than SIDS because grieving parents may withhold information. He explains: “We aren't doing this for humanitarian reasons. If the family doesn't admit to lying on top of the child during sleep … then we have no choice but to call it SIDS.”48
A young mother named Kimberly Edge was convinced that her baby died from suffocation. On September 19, 2004, she went to check on Kaitlyn, her four-month-old daughter, who had been asleep for two hours. She had placed the baby faceup in the crib, but Kaitlyn had learned to roll over and was lying facedown when Edge found her. At first she thought the baby was still sleeping, but when she reached in to turn her over, she saw that her face and entire body were blue. Certain that Kaitlyn had suffocated, Edge began performing CPR and called 911. She could not revive her daughter, however, and at the hospital she was told that Kaitlyn did not make it. “I went running down the hall screaming and crying,” she says. “It felt so unreal; I didn't know what to do. I wanted to hurt something, I ran outside the ER doors and leaned against the brick wall and started banging my head on it. I felt so much anger and pain.”49 Edge went back inside and was able to hold Kaitlyn for a couple of hours. A doctor came into the room and told her that her daughter had died of SIDS. She told him no, the baby had suffocated, which she believed because Kaitlyn was facedown and blue when her mother found her. The doctor assured Edge that Kaitlyn showed no signs of suffocation, and SIDS was ruled the official diagnosis. Yet for a long time she continued to question the diagnosis, and she posted a comment online in October 2007 about her uncertainty. “I have always wondered if she rolled over and because of her bedding being softer than the floor she couldn't roll herself completely,” she wrote. “Could this be the case?”50
It is an undisputed fact that SIDS is a baby killer, but how often it is properly diagnosed is questionable. Some infant deaths that might have been attributed to SIDS have proved to be accidental suffocations, while in other cases babies were murdered. When comprehensive investigations take place after a baby dies, they result in the most accurate findings. But until these investigations are the norm for all infant deaths, uncertainty and inconsistencies are likely to figure in the diagnoses of sudden, unexplained infant deaths.