The Sudden Infant Death Syndrome Alliance
1314 Bedford Avenue
Suite 210
Baltimore, Maryland 21208      # 410-653-8226     # 800-221-7437     FAX 410-653-8709

E-Mail sidshq@charm.net
ADVISORY www.sidsalliance.org

TO: Affiliate Presidents and Executive Directors
FROM: Judith S. Jacobson, Executive Vice President
DATE: 4/3/01

RE: Setting a Research Agenda for Stillbirths

In recognition of the SIDS Alliance's commitment to decrease overall infant mortality,
we were invited to participate in a workshop convened by the National Institute of
Health on Monday, March 26, 2001 to develop a national agenda for stillbirth research.
Obstetric, perinatal and pediatric experts from across the country joined with federal
officials and representatives of parent groups to evaluate current knowledge and help
craft a national plan to address this issue.

Stillbirth rates in the United States currently occur at rates of 5 -12 in 1000 births.
In 1996, the most recent available data, there were approximately 3.9 million live
births and 65,163 babies who died before birth.(1) Of that number, 35,990 were
losses before 20 weeks and 29,153 were stillbirths after 20 weeks.(2) Typically,
50% of these stillbirths have an undetermined cause of death. Currently there is no
significant funding ongoing for research into the etiology and/or pathogenesis of stillbirth.

Nationally, no data are collected on cause of death, prior to delivery, although 40 states
do use a code for age and cause of death. Fetal mortality rates vary by race, ethnic origin,
marital status and age of the mother, with the youngest and oldest mothers experiencing the
greatest risk of fetal mortality. The fetal mortality rate was over two-fold higher for black
mothers (12.5) than for white mothers (5.9) in the 1996 data.(3)

It is believed that many causes of late fetal mortality and early neonatal mortality may have
shared etiology. Some of the risk factors for SIDS also increase the risk of stillbirths and
other perinatal deaths. A better understanding of these outcomes would enhance scientific
knowledge and could help lead to the development and evaluations of improved clinical and
preventive interventions.

The agenda formulated by this workshop include the following:

· Improvement of record keeping and reporting in each state;

· Adoption of a standard postmortem protocol for stillbirths;

· Research into the actual causes in the deaths of healthy-appearing full term babies;

· Better education of medical providers and families experiencing stillbirth losses
  about the benefits of postmortem determinations;

· Identification of causal factors to decrease the risk of future stillbirths;

· Increased awareness of the stillbirth problem for the general public;

· Dissemination of perinatal loss bereavement resources.

We will keep you apprised as this initiative develops.

(1) U.S. Department of Health and Human Services. Center for Disease Control
and Prevention. National Center for Health Statistics. Monthly Vital Statistics Report.
Report of Final Natality Statistics, 1996. Volume 46, Number 11, Supplement, June 30, 1998.

(2) U.S. Department of Health and Human Services. Center for Disease Control and
Prevention. National Center for Health Statistics. Documentation of the Fetal Death Tape
File For 1996 Data. Public Use File retrieved January 20, 2000 from the World Wide Web: http://www.cdc.gov/nchs/about/major/dus/fetal/96fetal.htm.

(3) U.S. Department of Health and Human Services. Center for Disease Control and Prevention.
National Center for Health Statistics. Infant Mortality Rates, Fetal Mortality Rates, and Perinatal
Mortality Rates, According to Race: United States Selected Years 1950-96. FASTATS A to Z
retrieved December 15, 1998 from the World Wide Web: http://www.cdc.gov/nchswww/datawh/statab/pubd/hus98t23.htm