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Twins and Sudden Infant Death Syndrome

by Marla Courtney Wood

It has been awhile since I have written. I am attaching a copy of a report I
did on SIDS and twins. I would greatly appreciate it if you would place it
on the website somewhere where it will be easy to find. I went crazy looking
for information on the subject. . . I know it would help a lot of people who have
questions or concerns about their twins or surviving twins. thank you for
listening and I hope you find this informative. Feel free to attach my
e-mail address.

Marla Courtney Wood
in loving memory of Cameron and Chloe

Date: Sat, 7 Oct 2000

Twins and Sudden Infant Death Syndrome

Each year, an estimated 7,000 babies die of Sudden Infant Death Syndrome (SIDS), in the United States alone. More children die of SIDS than Aids, Cancer, Heart disease, Child Abuse, Cystic Fibrosis and Muscular Dystrophy combined (Holcher 1). It is by far the deadliest and the most mysterious syndrome known to effect children. Very little is known about SIDS, however, statistics show that 95 percent of SIDS deaths happen between 2 and 4 months of age. The death rate for SIDS nearly doubles in winter months, when the weather turns colder (Spiers 1).

SIDS is defined as the sudden death of an infant under one year of age that remains unexplained after a thorough investigation, including a complete autopsy, examination of the death scene, and review of the clinical history (Holcher 11). Any baby can die of SIDS, there are no exceptions, although males are 50 percent more likely to succumb to SIDS, and death rates are higher in African American babies than Caucasian babies. SIDS is silent, sudden and unpredictable. SIDS babies appear to be healthy and normal prior to death, victims usually show no symptoms except for signs of a slight cold. SIDS is not caused by choking, vomiting, illness, immunizations or child abuse (7).

For many years doctors and scientists have studied the mystery surrounding SIDS. Through the years, doctors have compiled a list of "risk-factors" that when avoided could greatly reduce the chance of a SIDS occurrence. These factors include: maternal smoking when pregnant, smoking near the baby, maternal drug use, poor pre-natal care, premature birth, SIDS siblings, young maternal age, short intervals between pregnancies, infants sleeping in a prone position (on their stomach) and multiple births. Losing a child to SIDS is the most bewildering, horrific experience for parents. The only thing worse than losing one child to SIDS, is losing two children to SIDS. It can and it does happen, especially with twins.

Multiple births have fascinated people since the beginning of time. Twins are especially intriguing, because of the tight bond that forms in the womb and lasts throughout their lives. Several studies have been done on the relationships of twins. Our fascination with the mirror image of identical twins is evident in advertisements, television commercials, television shows and movies. We look upon them in awe marveling at the miracle that stands before us. Twins have been known to develop their own language at an early age, communicating only with each other, while frustrating those left out of their secret world. Some twins are unable to live apart from each other, preferring to stay together for all of their lives. There are several documented cases of twins "feeling" their co-twins pain, emotions and sometimes even illnesses. On June 3, 1999, identical 67 year old twins Robert and Richard Tenniswood, suffered identical coronaries while mowing their lawns (Yamasari 101). Twins also find it difficult to survive without each other, often times dying within months, sometimes days of each other. Surviving twins struggle with the tremendous loss of losing their other half, whether they lose them at old age or at birth. Twinless twins, as they are called, usually have an overwhelming feeling that something is missing in their lives. It is for this very reason why I believe twins easily succumb to SIDS.

The rate for SIDS deaths in singleton babies is 1 baby per thousand births. The rate for SIDS deaths in twins has been as high as 9 babies per thousand births, but is usually documented as 4 deaths per thousand babies. (Beal 1039). These rates seem to keep rising as more couples use fertility drugs to help conceive. The drug Chlomid especially increases the chances of conceiving multiples. Some speculate that the risks are higher in twins because of premature birth and low-birth weight. Some studies have shown that the second-born twin is more likely to die of SIDS. A sample study conducted from 1973 until 1988 revealed that out of 37 twin infants who died of SIDS, 15 were first-born twins, and 22 were second-born twins (2). Studies in Europe do not support this theory, stating that first-born twins are just as susceptible to SIDS as second-born twins are.

An immediate concern of a family that has lost one twin to SIDS, is losing the surviving twin to SIDS also. The rate of concordancy for losing both twins to SIDS varies. In one report, Dr. Phillip Spiers noted that his data showed that there were 17 pairs of twins where both infants died of SIDS. He noted that dizygous (fraternal) and Monoqygous (identical) twins were at the same risk level. It did not matter whether or not the twins were of the same sex. He also examined the time span of the deaths, and found that in 9 of the 17 cases, the co-twins died on the same day, while the remaining 6 died within one month of their twin (Spiers 5). His data suggests that the time period when family should be most concerned about the surviving twin is one month.

Between 1976 and 1978 a volunteer "family study questionnaire" was submitted to parents of multiples. Of the 1,263 families who responded, 69 families lost a twin or triplet to SIDS and in 3 of these cases a co-twin subsequently died of SIDS. The time interval between these SIDS deaths' was 26, 46, and 171 days (C.L.I.M.B). Therefore, the rate of concordancy for losing a co-twin to SIDS, given that one twin has died of SIDS is 2.8 percent, meaning that 1 in every 125 families will experience the death of one twin to SIDS while 1 in every 4,460 families will experience the death of both twins to SIDS (Beal 1044). The simultaneous death of both twins raises suspicion toward the parents or care givers. Dr. John E. Smialek, is considered to be a well-known expert in the studies of Simultaneous SIDS in twins. In his studies, he has encountered several cases of simultaneous SIDS as a respected Medical Examiner in the Baltimore, Maryland area. He has personally worked on 9 of these cases. In Wayne County, Mi., two cases of simultaneous SIDS occurred within 5 years of each other. During the first case the death of the twins resulted in an atmosphere of intense suspicion of the parents that was verbalized by members of the medical community and other person who were unaware of this medical phenomenon. The twins' deaths were labeled as SIDS after intense investigations involving both local police agencies and the medical examiner. After numerous tests came back negative, the cause of death was listed as SIDS (Smialek 817). When simultaneous twin deaths

occurred in Detroit 5 years later, it was investigated in the same thorough manner but, with much less suspicion. Days after the second case was made public, calls were received from investigators in other states who had just completed investigations concerning the death of both twins. In all cases reported, the cause of death was determined to be SIDS (818). Although SIDS is now widely accepted as a condition that parents have no power to predict or prevent, the occurrence of the simultaneous death of infant twins is a phenomenon that still evokes bewilderment and suspicion. This phenomenon has received little previous attention in the United States and also has been documented in Europe by researchers in Sweden, England, and Germany. It is unknown the exact number of both twins dying simultaneously world-wide but, a good estimate is approximately 60 infants or 30 pairs of twins who have died from this phenomenon. It is the very quality of being a twin which somehow or other is combined with a predisposition to sudden, unexplained death. (Smialek 816)

As a mother who has experienced the loss of both twins to SIDS, I feel the subject of twins and SIDS needs to be brought to the attention of medical personnel world-wide. Not only have my family and I been devastated by the loss of our healthy babies, we have endured intense suspicion in our community. Losing a child is probably the worst pain any person can endure and to be placed under suspicion severely hinders the healing process. Medical personnel and police investigators need to be aware that they are dealing with families who have suffered the pain of losing a child not only once but twice, and investigations need to be handled very carefully and with the utmost concern for the families.

Unfortunately, many parents of multiples are not informed of the increased risk to their infants. Several members of the medical profession feel it is unnecessary to frighten parents, considering SIDS cannot be predicted or stopped. Doctors should recommend the use of breathing monitors on surviving twins and subsequent children. Although nothing can stop SIDS, monitor alarms warn parents when there is something wrong. I often wonder if there is anything that I could have done differently that would have saved my children's lives had I known the risks. I will never understand why the risk factors for twins and SIDS are not more known to the public. By raising SIDS awareness we can inform the public about the possible loss of both twins to SIDS, therefore reducing the chances of suspicion for the families. Ever since the Pediatric Medical Association launched the "back to sleep program", encouraging parents to place babies on their backs during sleep, SIDS has experienced a decline in statistics. It is not a cure, but a step in the right direction.

In conclusion, my hope is that someday researchers will find a cause for SIDS that will eventually lead to a cure. If we continue to raise SIDS awareness and encourage monetary donations for research, we can all work together to find a cure. By sharing information with medical personnel, police and social workers we can help save the lives of potential SIDS victims as well as provide proper counseling for grieving families. During the time it has taken me to write this paper, approximately 24 babies have died of SIDS. Perhaps one of these babies has a surviving twin that should be placed on a breathing monitor to ease the parents fears and possibly save his or her life. Without the proper awareness many more babies will die. Aren't 7,000 babies lives worth it?

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