Update on the Progress of Stillbirth Research

By Richard K. Olsen, founder and Executive Director of The National Stillbirth Society

Long a champion of the fight against SIDS, the National Institute of Child Health and Development (NICHD) - a Branch of the National Institute of Health in Washington DC - is at long last turning its attention to stillbirth. Depending upon the source of the data used, stillbirth, which claims between 26,000 and 39,000 babies every year - most at or near full term - remains one of the last great mysteries of obstetrics.

Only about 40% of stillbirths can be attributed to a specific cause; the rest are categorized as "unknown". And yet babies, like adults, die for a reason. The problem is that the reason is not known in the majority of cases. Not knowing the reason means there can be no preventative. Not knowing leaves parents without closure and poses concerns for subsequent pregnancies. And yet, that hopefully is about to change.

NICHD, which helped promote the "Back to Sleep" campaign for SIDS, has been responsible for a 50% reduction in SIDS deaths during the past decade. It is precisely because of this success that they are now able to turn their attention to stillbirth. That and the fact that parents are demanding answers.

On March 26th of this year NICHD held a workshop in Washington to set a national agenda for stillbirth research. In the workshop they acknowledged there is currently no significant funding for research into the etiology and/or pathogenesis of stillbirth. They further pointed out that nationally no data are collected on the causes of fetal death prior to delivery, although 40 states do use a code for age and cause of death.

The agenda formulated by this workshop includes the following:

Improvement of record keeping and reporting in each state

· The Center for Disease Control (CDC) is in the process of revising their fetal death certificate to be more sensitive to bereaved families' needs.

· Improved education of how to complete the forms for the physicians and health information services. Also the draft of an informational form that would accompany the death certificate document for parents to complete was introduced by the CDC.

Adoption of a standard postmortem protocol for stillbirths

· The committee devised a protocol that will be given to the American College of Obstetricians and Gynecologists (ACOG).

· Improved education of medical students/professionals on the sensitive ways to present the choice of autopsy.

· Better education of medical providers and families experiencing stillbirth losses about the benefits of autopsy.

Research into the actual causes in the deaths of stillborn babies and causal factors to decrease the risk of future stillbirths

Areas that were explored at the meeting were:

· Medical conditions
· Placental and fetal pathology
· Umbilical cord accidents
· Genetic/metabolic causes
· Infectious causes
· Blood clotting disorders
· Unexplained stillbirths
· Relationship of stillbirths to deaths in the early newborn period

Increased awareness of the stillbirth problem for the general public

· Press releases were sent out to all the major metropolitan medical writers and to the participants of the workshop.

· Continuous updates of information on this web page of the National SHARE website and in both the SHARE newsletter for bereaved parents, Sharing, and the newsletter for SHARE group facilitators, Caring Notes.

Dissemination of perinatal loss bereavement resources

· Shared available resources with group.
· Ways to collaborate with bereaved parents and all the perinatal loss groups were addressed.

The December 2001 issue of Seminars in Perinatology will be dedicated to stillbirth. It will contain manuscripts, which resulted from the NICHD meeting. Topics include:

· Setting a research Agenda for Stillbirth
· Vital statistics as a data source
· The National Fetal Death File
· Certificate of Birth Resulting in Stillbirth - the Arizona Story
· Overcoming Data Gaps and Methodological Barriers to Population Based Research on Stillbirths
· The contribution of stillbirths to US perinatal mortality rate, 1995-98
· Epidemiology of stillbirth
· Maternal Medical Disease: Risk of Antepartum Fetal Death
· Inherited and acquired thrombophilias and stillbirth
· Genetic and metabolic disorders and stillbirth
· Stillbirth: infectious etiologies
· Umbilical Cord Accidents: Human Studies
· Stillbirth: Tissue Findings with Environmental and Genetic Links
· Neuropathology Associated with Stillbirth
· Sudden fetal and infant deaths: shared characteristics and distinctive features

In addition the American College of Obstetricians and Gynecologists (ACOG) will survey the Fellows for their practice patterns in stillbirth. A questionnaire has been developed and should be in the field shortly.

An initiative to stimulate research into stillbirth has been submitted for the FY 2003 planning process at NICHD. In the Center for Research for Mothers and Children, this was the number one initiative sent forth. That so many branches agreed that this is an important topic to receive top priority is very exciting.

MISS, represented by member Richard Olsen, has met with Dr. Duane Alexander, Director of NICHD and Drs. Cathy Spong and Marian Willinger, both of whom will be assigned to the stillbirth research effort. At that meeting Richard learned that NICHD is also hiring a third team member, another physician, to join the stillbirth group.

MISS has taken an initiative to intervene in the Congressional budgeting process, with the support of NICHD and our own Congressman Bob Stump, to include a research mandate in the FY2002 NICHD budget that is very near approval. It remains to be seen if the recent events in Washington will interfere with this action item.

Author Biography
Richard Olsen and his wife Sharon are the parents of Camille Rayana who was stillborn August 17, 2000 at full term. (www.camilleolsen.com) While they are members and supporters of MISS, Richard felt he wanted to do more specifically to promote stillbirth research and so has founded The National Stillbirth Society. It will be an advocacy and informational organization and will be going online after the first of the year with its own website, www.stillnomore.org

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