SIDS RESEARCH, PART III:
SPECIAL PROJECTS OF REGIONAL AND NATIONAL SIGNIFICANCE (SPRANS)
-reprinted with permission from the Information Exchange the newsletter of the National
SIDS Resource Center
The best hope for eliminating SIDS lies in discovering its cause. For this reason,
research is crucial. Part I summarizes the various components of the overall research
effort, explains prevailing theories, and explores the issue of risk factors. Part 2 of
the article describes specific new avenues of inquiry, focusing on the research of the
National Institute on Child Health and Human Development (NICHD). Part 3 completes the
series with highlights of the SIDS-related projects funded as Special Projects of Regional
and National Significance (SPRANS) by the Maternal and Child Health Bureau (MCHB).
MATERNAL AND CHILD HEALTH SERVICES BLOCK GRANT.
The Omnibus Budget Reconciliation Act of 1981, Public Law (PL) 97-35, amended Title V
of the Social Security Act for a Maternal and Child (MCH) Services Block Grant, thus
enabling the States to maintain and strengthen their leadership in planning, promoting and
coordinating health care services for mothers and children and to support health care
services for those who do not have access to quality maternal and child health care. SIDS
services were included in the block grant program, with the level and focus of such
services to be determined by the States. Eighty-five percent of the basic MCH Services
Block Grant funds are allocated for the States' core services and programs for mothers and
children, known as the Consolidated State Programs.
The remaining 15 percent has been set aside to fund SPRANS. These projects include
training; research; genetic disease screening, testing, and referral; hemophilia diagnosis
and treatment; and maternal and child health improvement projects (MCHIP). SPRANS projects
demonstrate and test various protocols for improving the health of mothers, infants,
children, adolescents, and children with special health care needs; these programs also
study ways to improve access to and delivery of quality maternal and child health care.
SPRANS projects must support national needs and priorities, be of regional and national
significance, and improve State systems of health care for mothers and children.
Information and data generated from SPRANS projects are used in the planning, development,
and implementation of maternal and child health services.
Products, practices, innovations, and information are shared with national, State, and
local agencies and professionals. Through SPRANS, the MCHB supports projects and provides
research grants that are intended to develop new knowledge to the health problems of
mothers, children, and children with special health care needs. The training or continuing
education grants foster leadership skill-building in a variety of specialized health
professions, as well as interdisciplinary training required to provide comprehensive
maternal and child health care; offer specialized clinical or laboratory training and
services not routinely available; incorporate professional consultation and technical
assistance as part of training activities; and focus on upgrading skills and competencies
of State and local MCH personnel.
MCHIP grants support projects that demonstrate how State and local agencies and
organizations can creatively modify their health care systems to improve the health status
of mothers and children within their service areas. MCHIP projects develop systems to
gather, analyze, disseminate, and store data and information for use by any sector of the
MCH community. Part III of this series of articles highlights nine SPRANS projects. These
sample projects, covering 1981 to 1993, were chosen because of their relevance to SIDS and
related issues such as infant mortality, postneonatal mortality, and grief involved with
infant loss. Each project description includes the title, recipient of the grant, the
project director(s) or principal investigator, the time period for the project, and a
References for publications resulting from the projects are listed where available.
Most of the information in the summaries was obtained from the National Center for
Education in Maternal and Child Health's (NCEMCH) database of SPRANS projects and from
other MCHB publications.
SIDS Loss:Psychosocial Impact and Predictors of Coping
Research Center for Group Dynamics
Camille B. Wortman, Phd., and Roxane L. Silver, Phd.
9/l/81 - 8/31/86
In a longitudinal study of 124 parents interviewed at 1 month, 3 months, and 18 months
following the loss of their infant, Drs. Camille Wortman and Roxane Silver assessed the
psychosocial impact (i.e., emotional and psychological responses to the loss and their
changes over time) of the loss of an infant to SIDS and identified predictors of
successful adjustment to such a loss.
The parents were questioned concerning their emotional reactions, attributions of
blame, ability to find meaning in their loss, perceived social support, and their coping
strategies at each point in time. The questions were designed to assess various indicators
of coping and adjustment including physical, mental, and social health and general
In their final report to the MCHB, Drs. Wortman and Silver summarized their findings as
follows: Parents reported a considerable variability in response to loss; some experienced
significant distress while others displayed few signs of depression immediately after the
baby's death or over time.
There was no evidence that individuals follow set patterns or stages of emotional
response following loss; a variety of positive and negative emotions were very prevalent
among SIDS parents and were often experienced simultaneously, even in the first weeks
after the loss.
Failure to experience significant distress following a SIDS loss does not necessarily
indicate there is a problem in the way the parents are grieving.
Those parents with the most distress 3 weeks post loss were the ones who continued to
show adjustment problems at the 18 month interview.
Wortman, C. and Silver, R. SIDS Loss: Psychosocial Impact and Predictors of Coping. Final
Report, April 1989. Available for purchase from the National Technical Information
Service, US Department of Commerce, Springfield, VA 22161, (703)487-4650, Publication No.
Wortman, C.B. and Silver, R.C." The Myths of Coping with Loss". Journal of
Consulting and Clinical Psychology.57(3):349-357,1989.
Downey;Silver,R.C.;Wortman,C.B."Reconsidering the Attribution-Adjustment Relation
Following a Major Negative Event: Coping With the Loss of a Child. "Journal of
Personality and Social Psychology 59(5):925-940,1990.
West Virginia Statewide SIDS Prevention Project
West Virginia University
David Z.Myerberg, MD
9/1/84 - 8/31/88
This project, based on studies in England and the United States indicating that better
general health care for at-risk infants could reduce the number of postneonatal deaths,
including SIDS, was designed to identify infants in West Virginia at risk for postneonatal
Birthing hospitals in West Virginia used an eight-factor birth scoring system for
approximately 75 percent of all births and the information was entered into a database.
Those infants with the highest scores were referred to primary care physicians for
extensive surveillance. Physicians returned data from the 7-month surveillance period for
each infant. A committee of neonatologists designed the Protocol for Evaluation of Infants
Considered for Home Monitoring for use by physicians caring for infants considered for
home monitoring, including siblings of SIDS infants, a surviving twin of a SIDS infant,
infants with apparent life-threatening events, and premature infants with apparent
The study description and results of the birth scoring portion of the West Virginia
project are contained in the West Virginia Statewide SIDS Prevention Project Final Report
soon to be available for purchase from the National Technical Information Service,US
Department of Commerce, Springfield, VA 22161,(703)487-4650.
Since 1988, the State health department has continued to support the project, now
called the West Virginia Birth Scoring System. The system was expanded so that high-risk
infants could be referred to the public health nursing case management program. The
University of West Virginia now provides evaluation of infants with apparent life
threatening events and apnea. The University also established statewide recommendations
for standards of care for infants considered for home monitoring.
Identification of Risk for SIDS: Subsequent Siblings
American SIDS Institute
4/1/85 - 3/31/90
This study of subsequent siblings of infants who died from SIDS evaluated the
effectiveness of neonatal measures of respiratory instability obtained during feeding and
sleep, measures of passive muscle tone, and identified infants at risk for prolonged apnea
(no respiratory activity for longer than 18 seconds) or bradycardia (sudden drop in heart
rate to below 80 beats per minute for 5 beats or more). Preliminary findings from this
project indicate that by observing the physiology of feeding and sleep, and assessing
muscle tone, under carefully controlled conditions, researchers can establish valid
criteria for the early identification of subsequent siblings who would benefit from home
Approximately 400 subsequent siblings in Portland, Oregon and Atlanta, Georgia were
observed during activities such as sucking, feeding, and sleeping. Additional data were
collected on muscle tone during quiet and alert states. All infants were maintained on a
home monitoring system for at least 6 months as well as tested in the laboratory. Nurses
contacted parents weekly to discuss the baby's status.
Data analyzing 100 subsequent siblings after their first diphtheria-tetanus-pertussis
(DTP) immunizations failed to confirm that DTP immunizations are associated with an
increased frequency and severity of prolonged apnea. Findings from this study do not
support discontinuing home monitoring based on an infant's response to the DTP
immunization or using that response as determinant of continued risk of apnea and
Data were also obtained from 155 subsequent siblings followed at home who were on an
apnea/bradycardia monitor with an attached event recorder. In addition to the electronic
recordings, reports from parents about observed cardiorespiratory problems (e.g., if the
baby appeared to stop breathing, exhibited a change in skin color or tone, or if the
parents had to stimulate the baby to breathe) were compared to cardiorespiratory
activities recorded from monitor alarms. Results from detailed reports and comparisons
indicate that when using home monitors in the clinical management of at-risk infants, the
electronic event recordings are needed to supplement parents' observations.
Steinschneider,A.;Freed,G.;Rhetta-Smith,A.;Santos,V.R. "Effects of
Diphtheria-Tetanus-Pertussis Immunization on Prolonged Apnea or Bradycardia in Siblings of
Sudden Infant Death Syndrome Victims."Journal of Pediatrics 119(3):411-414, September
Steinschneider,A. and Santos,V.R. "Parental Reports of Apnea and Bradycardia:
Temporal Characteristics and Accuracy." Pediatrics 88(6):1100-105.
Model Intervention Program for Survivors of the Sudden Death of a Child: A Program
to Prevent the Complications of Abnormal Grief
University of New Mexico School of Medicine
Beverly White, RN, MS
10/1/85 - 6/30/89
Based on the New Mexico SIDS Information and Counseling Program, this project developed
and conducted an intervention program to assist families through the grief process after
losing a child suddenly and unexpectedly, thus, hopefully preventing events such as
illness, suicide, divorce, and substance abuse often associated with abnormal grief. A
model program was developed to educate professionals and the public about death and
bereavement; to emphasize the need for an autopsy and the provision of prompt, competent
service; to notify parents of autopsy results within 24 hours; to counsel the immediate
family and interested others as soon after the death as possible; to promote professional
and community endorsement of the project; and, to work with existing parent support
In a series of workshops, project staff trained volunteers in crisis counseling in the
event of sudden and unexpected death among children and adolescents younger than 18 years
of age. As part of the Office of the Medical Investigator, the project staff also worked
with professionals and the community in responding to sudden and unexpected child deaths.
When this type of death occurred, the local medical investigator examined the scene and
collected information based on an established investigative protocol. As part of the
crisis counseling, the family received referral information to a local counselor as well
as a personal letter and information about bereavement support. After microbiological and
histological examinations were completed, the family was invited to meet with the
As a result of this project, professionals and lay persons of diverse cultures and
socioeconomic backgrounds have mobilized into a voluntary support team. Procedures for
notifying the family of the pathological findings as well as providing information and
assistance are now well-established.
Renamed the New Mexico Grief Intervention Program (NMGIP), the project is currently
supported by the State to provide crisis intervention and education free of charge to
those families residing in New Mexico who have experienced the sudden and unexpected death
of a child aged 0 to 18 years old. In 1991, NMGIP provided crisis intervention and grief
management to 438 families. Project staff and volunteers offered support by mail,
telephone, and/or in person to a total of 3,297 contacts. In addition, 131 education
sessions reached approximately 1,486 professionals and other individuals.
Race and Risk for SIDS
American SIDS Institute
Philip Spiers, Phd
11/1/86 - 10/31/87
This project studied the increased risk for SIDS among certain racial and ethnic
minorities. Among blacks and Native Americans, the incidence of SIDS is almost twice that
compared to the white population. There is also higher prevalence of maternal and infant
characteristics associated with SIDS in blacks and Native Americans. The project examined
the birth and death records of infants in North Carolina, Oklahoma, and Oregon who died
from SIDS during 1975-1982. SIDS cases were determined by selected code numbers from the
International Classification of Diseases provided on the death certificates. Analysis of
study results examine the differences in findings among the three States targeted. The
study description and results are available in a final report of the project which may be
obtained from the National Technical Information Service, US Department of Commerce,
Springfield, VA 22161,(703)487-4650, Publication No. PB89-218614.
Oregon SIDS Prevention Project
Oregon Department of Human Resources
Grant Higginson, MD
10/1/89 - 9/30/92
This demonstration project is working to reduce Oregon's postneonatal deaths, including
those from SIDS, by identifying infants at higher risk for postneonatal death and
providing intensive nursing intervention.
The Health Division, Oregon Department of Human Resources, developed a risk-screening
tool for use with an established system of newborn screening in Marion County. Based on
the literature and input from a physician advisory board, point values were assigned to
past health history, socioeconomic status, prenatal history, immediate postpartum medical
history, and other medical factors.
Local public health nurses screen and identify high-risk infants for SIDS. Nurses also
provide supportive services, such as teaching selected parenting skills thought to be
associated with the prevention of postneonatal deaths, to families of these high-risk
infants. Although certain health-related factors appear to be associated with increased
risk for SIDS, preliminary findings from this study do not indicate that any one health
risk factor or behavior is clearly identified as causing SIDS. However, intensive public
health nursing care may lead to improved health care practices and eventually translate
into fewer postneonatal deaths.
Center for Inherited Disorders of Energy Metabolism
Case Western Reserve University School of Medicine
Douglas S. Kerr, MD, Phd
Sudden infant deaths, some possibly diagnosed as SIDS, may be associated with a group
of inherited diseases of energy metabolism. The underlying defects may interfere
specifically with oxidation of carbohydrates or fat, or more generally, with all energy
producing fuels (pyruvate and fatty acid oxidation, Krebs cycle, and electron transport
The Center for Inherited Disorders of Energy Metabolism is addressing the need for
advanced professional training and clinical and diagnostic services for evaluating and
treating infants and children with diseases causing metabolic disorders. The program
provides advanced training to professionals interested in inherited disorders, offers
comprehensive biochemical laboratory diagnostic services for patients affected by
disorders of energy metabolism, educates practitioners about how to recognize and treat
these disorders, and facilitates independently supported research to improve future
diagnosis and treatment of these conditions.
Center faculty have organized and are presenting continuing medical education programs
on clinical and scientific aspects of disorders of pyruvate metabolism, fatty acid
oxidation, the electron transport chain, and specific disease conditions associated with
Nationwide Assessment of SIDS Services
University of Rochester School of Medicine and Dentistry
John G. Brooks, MD
l0/1/91 - 9/31/92
This nationwide assessment of SIDS services will identify the number of SIDS deaths;
the actual and legally mandated procedures for diagnosing SIDS; the availability of
information, education, counseling, and management services to families and communities;
types of service providers; utilization patterns for these services; and reasons for non
availability of services. The study also proposes to determine the availability of SIDS
education programs and services for health professionals and emergency medical personnel.
A questionnaire has been developed for distribution to five target populations: State
MCH Directors, State medical examiners or coroners, Director of Vital Statistics Offices,
SIDS peer support groups, and State SIDS Program Coordinators. Data will also be collected
from a random sample of SIDS infants studied in the 1988 National Maternal and Infant
Health Survey (NMIHS). A summary of the status of SIDS services in the United States will
be produced upon completion of the project.
National Fetal-Infant Mortality Review Program
American College of Obstetricians and Gynecologists (ACOG)
Louise Wulff, Sc.D
6/1/90 - 5/31/93
Since its inception in 1990, the National Fetal-Infant Mortality Review (NFlMR)
Program, a mortality review initiative of the American College of Obstetricians and
Gynecologists (ACOG), has developed a partnership of the private and public sectors to
provide a comprehensive approach to understanding and combating fetal and infant mortality
nationwide through case by case reviews of fetal and infant deaths.
A steering committee of representatives from 12 medical and health organizations has
furnished guidance and technical assistance. Additional support and funding are being
provided by MCHN, the March of Dimes Birth Defects Foundation, the ACOG Development
Committee, Carnation Nutritional Products, and the Centers for Disease Control, thus
enabling the NFIMR Program to construct a strong foundation of community based initiatives
from which a technical assistance model can be developed. The NFIMR Program will stimulate
and support the development of community based fetal and infant mortality review groups;
offer a technical assistance program; and provide an information/resource center to gather
information on fetal and infant mortality and mortality review as well as respond to
Alamenda and Contra Costa Counties, California; San Bernardino, California; Southwest
Georgia; Springfield, Massachusetts; Battle Creek, Michigan; Saginaw County, Michigan; and
three perinatal councils in West Virginia were selected in May 1991 to develop fetal and
infant mortality review systems under 3-year grants from the NFIMR. Each of these
communities reports infant mortality rates greater than the U.S. 1990 goal of 9.0 deaths
per 1,000 live births as defined in Health Objectives 1990. Each project site has
demonstrated local professional support, community consensus of assessment of need, and
commitment of community resources to mortality review activities. The NFIMR Technical
Assistance Program developed a comprehensive manual of technical materials and guidelines
on various aspects of mortality review entitled: A Manual for Fetal and Infant Mortality
Review. Copies are available from the NFIMR Information Resource Center at $25.00 per copy
to cover printing and distribution costs.
For further information on the NFIMR Program please contact Elaine Garber, Information
Assistant, NFIMR Program, 409 12th Street, SW, Washington, DC 20024-2188; 202-863-2489.