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American SIDS Institute
528 Raven Way
Naples, Florida 34110
Phone: 239-431-5425
Fax: 239-431-5536

 

 

 

Founded in 1983, the American SIDS Institute, a national nonprofit, tax exempt health care organization, has had as its mission to prevent and conquer sudden infant death and to promote infant health. The Institute strives towards accomplishing this mission through an aggressive, comprehensive nationwide program of research, clinical services, education, and family support.

 

 

 

Sudden Infant Death Syndrome, or SIDS, is the unexpected death of an infant whose death remains unexplained after all attempts, including an autopsy, have been made to find a cause. It is the number one category of death in infants between one month and one year of life. In a typical situation the mother or father puts their apparently well baby down for a nap or for the night and returns to find their baby dead. Since the medical community cannot tell the parents why their baby died, they often blame themselves or each other. This often results in even greater tragedy.

We also know that there are variables that are not the cause of death but may contribute to the cause. For example, infants who are placed on their stomachs to sleep are at greater risk of death than those placed on their backs. However, the majority of babies who sleep on their stomachs do not die, and many infants die who are on their backs. Among other contributing variables are fetal exposure to drugs and tobacco, low birth weight, and poor prenatal care. The educational efforts of the American SIDS Institute and others have resulted in a 52% reduction of SIDS deaths from 1990 to 2000 (the last year for which data are available). We believe that the remaining SIDS deaths (approximately 2,500 per year in the United States alone) can only be eliminated through additional research.

Undoubtedly there are several underlying causes for sudden (and currently unexplained) infant deaths. However, we now know that most (60% - 70%) of the deaths are related to a subtle chronic abnormality, which occurs before birth. At this time we do not know the specific pattern or nature of this chronic abnormality. Therefore, our clinical efforts have been aimed at identifying high-risk infants, and seeking to reduce the death of the infants, through the use of home monitors and parent education.

In the near future, the Institute plans to organize and sponsor a number of research projects which could lead not only to a major leap in our understanding of SIDS but to improved efforts at prevention and treatment. If this research effort is successful, we will be able to (1) determine the major cause of SIDS, (2) diagnose those infants born with this chronic abnormality, (3) determine the underlying prenatal cause or causes of this abnormality, and (4) identify the most effective prevention and treatment modalities to prevent related infant death. This overall effort will provide the basis of eliminating SIDS as a cause of infant death.

The research will attempt to answer three important questions:

1. What are the major abnormalities associated with sudden infant death? Research will be directed at defining the abnormalities and developing techniques to be used by pathologists in autopsies to diagnose these abnormalities. The project will involve many pathologists; each of whom would be responsible for examining a different tissue from a number of SIDS victims and other infant deaths. A task force made up of pediatric pathologists will develop the specifics of the research project.

2. What tests can be used to identify infants most likely to die of SIDS? Research will be conducted into the development of a way to identify at birth, or soon after birth, those infants who suffer from the subtle and potentially fatal abnormality.

3. What happens during pregnancy to put infants at greater risk for sudden death? Very little research has been conducted on determining those prenatal factors responsible for the chronic abnormality. A task force of perinatal experts will design a number of comprehensive projects directed at understanding what goes wrong during pregnancy that results in SIDS. Then it would be possible to avoid the pathways that result in the abnormality.

Each project will cost between $20,000 and $50,000 in the planning stages and at least $1,000,000 in the actual performance of the research. This research must be conducted, however, if we are to win the fight against SIDS. Every baby deserves the promise of life. We are at the threshold of a breakthrough in our understanding of sudden infant death. To move ahead we need a larger amount of research dollars than has previously been available. Sudden Infant Death Syndrome can be eradicated within our lifetime, and that is our goal. We need the help of concerned individuals, businesses, and foundations to solve the puzzle of SIDS.

 

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