4.3 MILLION BABIES STILLBORN EACH YEAR
Researchers Gather to Find Out Why
On May 26 in Bethesda, MD, a group of 50 medical researchers from around the world came together to share their findings on a subject that goes largely ignored: stillbirth. In the United States alone, approximately 26,000 babies are born still each year. Worldwide, that figure reaches 4.3 million deaths each year. In order to discus current research efforts around the world and to begin an organized, collaborative initiative to address these alarming statistics, the International Stillbirth Alliance (ISA) convened the first global research roundtable on the topic. In attendance were researchers from the U.S., Norway, Sweden, the U.K. and Australia.
Of primary concern was the fact that there is no internationally recognized definition of a stillbirth death. There is also no uniform means by which these deaths are autopsied, investigated and/or classified � leaving researchers little to go on in trying to uncover possible causes and/or preventative strategies. As a result, the meeting focused on the definition and the development of a classification system of diagnosing stillbirth deaths.
In the United States, a stillbirth is defined as the death of a baby in utero that has reached 20 weeks gestation. Internationally, the range is anywhere from 16-28 weeks gestation. Unfortunately, the majority of stillbirth deaths occur during or just before delivery, when the baby most definitely could have survived outside the womb. Because the autopsy rate for these deaths is extremely low, as many as 2/3 of these deaths are classified as unexplained.
"Unexplored doesn�t mean unexplained," said Dr. Frederik Froen, a researcher out of Norway and chair of the ISA scientific advisory board. "Unexplained stillbirth needs to be a diagnosis of exclusion after every effort is made to discover the cause of death. It is critical that autopsies be performed on all stillbirth deaths according to uniform protocols if we are to make progress in understanding the plethora of etiologies that comprise these infant deaths."
It was suggested by the researchers that the World Health Organization (WHO) definition of prenatal life starting at 22 completed weeks of gestation b used universally as the stillbirth definition. It was also noted that stillbirth deaths are still not included in the WHO "Global Burden of Disease" used for estimations of principle global health issues. "The development of an internationally accepted definition and uniform classifications for stillbirth deaths is long overdue," concluded Froen.
The researchers identified four main issues in regard to the classification of stillbirth deaths as: 1) the basic definition; 2) causes of death versus obstetric risk factors; 3) hierarchical classification systems; and 4) the information that is of unique interest in a stillbirth classification. The viewpoints of the researchers on these issues vary. While there was consensus in many areas, there is no doubt that discussion on an international classification system for stillbirth deaths will be an important, albeit challenging, issue moving forward. The next meeting of the group of researchers will take place at a conference scheduled for October of 2005.
Dr. Froen also updated the group on the progress of the MOMS Study (Maternal Observations and Memories of Stillbirth), which is an international collaboration between volunteers from parental organizations and researchers from several universities. Women experiencing the birth of a baby, whether live or stillborn, can share information on their pregnancy and delivery via an online questionnaire. It is the goal of the MOMS Study to begin to provide important information that can be used for more targeted research into the causes and/or possible preventative strategies for stillbirth deaths.
For more information on ISA, current research efforts or to participate in the MOMS Study, please visit www.stillbirthalliance.org.
Summary of Meeting Discussions
Slide Presentations - Coming Soon!
SUMMARY OF 2004 STILLBIRTH RESEARCH ROUNDTABLE DISCUSSIONS
Following is a brief summary of the discussions that took place at the 2004 Stillbirth Research Roundtable meeting on May 26 in Bethesda, Maryland. A list of attendees follows.
A special thanks to all those that participated in this groundbreaking meeting! We look forward to our continued networking as we work to identify causes and possible preventative strategies for these tragic deaths.
2004 STILLBIRTH RESEARCH ROUNDTABLE
Medical Experts
Babill Stray-Pedersen, MD, PHD
Dept. of Gynecology/Obstetrics
The National Hospital, Norway
J. Frederik Fr�en, MD, PhD
Rikshospitalet University Clinic, Norway
ISA Scientific Advisory Board
Jason O. Gardosi, MD
Professor & Director
Perinatal Institute, UK
Karin Petersson, MD, PhD
Dept. of Obstetrics/Gynecology
Karolinska Hospital Huddinge, Australia
Marc Incerpi, MD
Keck School of Medicine
University of Southern California
Michael R. Berman, MD, FACOG
Obstetrics and Gynecology
Yale Univ. School of Medicine
Richard M. Pauli, MD, PhD
University of Wisconsin-Madison,
Wisconsin Stillbirth Program
Susan E. Crawford, MD
Department of Pathology
Northwestern University
Sven Cnattingius, MD, PHD
Professor, Karolinska Institutet
Sweden
Vicki Flenady, RN
Mater Health Services Research Support Center
Brisbane, Australia
Hamisu M. Salihu, MD
Birmingham, Alabama, USA
Jodi Abbott, MD
Beth Israel Deaconess Medical Center
Boston, Massachusetts
Paola Tovar-Kurth
San Antonio Metro Health, Texas
Siobhan Dolan, MD
Assistant Medical Director
March of Dimes
Yoram Sorokin, MD
Professor, Wayne State University
Hutzel Women�s Hospital, Detroit, MI
Ruth C. Fretts, MD, MPH
Harvard Medical School
Stephen Wall, MD, SM
Senior Research Manager
Save The Children
Gary Darmstadt, MD
Assistant Professor
Johns Hopkins University
NICHD National Network
Bob Silver, MD
University of Utah
Carol Hogue, PhD, MPH
Dept. of Epidemiology, Rollins School at Emory University
Sean C. Blackwell, MD
Hutzel Hospital/Wayne State University
Detroit, MI
Catherine Y. Spong, MD
Pregnancy & Perinatalogy Branch
NICHD
Deborah L. Conway, MD
Assistant Professor
University of Texas
Halit Pinar, MD
Perinatal and Pediatric Pathology
Brown Medical School
Uma Reddy, MD, MPH
Pregnancy & Perinatology Branch
NICHD
George Saade, MD
Professor, University of Texas Medical Branch
Marian Willinger, PhD
Special assistant for SIDS
NICHD
Matthew A. Koch, MD
RTI International
Robert L. Goldenberg, MD
Director & Charles E. Flowers Professor
University of Alabama at Birmingham
Guests
Antoinette Ayers
Executive Board Chair
International Stillbirth Alliance
Catherine Lammert, RN
Executive Director
SHARE Pregnancy and Infant Loss Support
Marian Sokol, PhD
President
First Candle/SIDS Alliance
Deb Boyd
Executive Director
First Candle/SIDS Alliance
Laura Reno
Director of Public Affairs
First Candle/SIDS Alliance
Dorotha G. Cicchinelli
Co-President
Pregnancy Loss & Infant Death Alliance
Joan Rector McGlockton
Vice President Corporate Affairs
Sodexho Corporation
Marcia Z. Bannon
International Stillbirth Alliance
Margarete Heber
National Stillbirth Society
Mary Geitz
ISA Executive Board
MISS Foundation, Chicago Director
Michael A. Youmans
CEO McDevitt Group
International Stillbirth Alliance
Monica Ryczek
Executive Board
International Stillbirth Alliance
Richard K. Olsen
Executive Director
National Stillbirth Society
Sherokee Isle
Co-Founder CPOP
Andrea Furia
Back To Sleep Campaign
NICHD
Lori Cooper
Executive Director
National SIDS/ID Project Impact
Paul S. Rusinko
Director, SIDS/ID Program
Health Resources & Services Admin.
Maternal and Child Health Bureau