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

List of Attendees

 

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.

Jason O. Gardosi (UK) and Vicki Flenady (Australia) presented their experience with the hierarchical RECoDe and Perinatal Society of Australia and New Zealand (PSANZ) classifications; both developed in the tradition of the "Aberdeen Classification" with primary emphasis on the identifiable relevant obstetric conditions associated with the death, but with additions for the fetal/pathological findings in the tradition of the "Wigglesworth Classification."

Gardosi highlighted that identification of intra-uterine growth restriction (IUGR by individualized growth charts makes IUGR the most important identifiable risk factor for stillbirth and an important entity in any classification.

Flenady underscored the importance of using subcategories to provide evidence for all classifications, e.g. whether or not an autopsy was performed or any placental pathology found in cases of IUGR.

Ruth C. Fretts (USA) and J. Frederik Froen (Norway) emphasized the need for unexplained stillbirths to be a diagnosis of exclusion through the performance of a thorough autopsy according to uniform protocols; in particular, the need for stillbirth registries to include not only gestational age at birth, but also probable gestational age at the time of death.

Sven Cnattingius reported on the experience from the Nordic national birth registries, which indicates the need for major efforts in prospective studies on stillbirth deaths. Dr. Cnattingius acknowledged that the difficulties in classifying stillbirths by cause of death based on the obstetric complications as used in existing registries may be hard to overcome.

Critics of the hierarchical classification systems using obstetrical characteristics and symptoms as causes of death argued the need to use things such as growth restriction and hypertension of pregnancy as subcategories for the pertinent cause of death, stating that using only the cause of death will hamper any further progress in understanding how risk factors affect various intrauterine pathologies.

In contrast to the traditional classification approaches, Halit Pinar (USA) introduced plans of the U.S. National Institute of Child Health and Human Development Stillbirth Research Network to develop a classification system based primarily on placental examinations and findings; as a majority of intrauterine pathologies are either caused by or cause placental pathology.

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

SLIDE PRESENTATIONS

High Risk Pregnancy: Maternal Diseases – Causes or Risk Factors? (download this PowerPoint presentation, 5.1M)

Uma M. Redy,MD, MPH, Pregnancy and Perinatology Branch, NICHD, NIH

Infection – Fetal Death: A World Perspective (download this PowerPoint presentation, 123k)

Babil Stray Pederson,MD, PhD, Dept. OB/GYN, The National Hospital, Oslo, Norway

National Data Bases and Classificaitons of Death in Sweden (download this PowerPoint presentation, 175k)

Sven Cnattingius, Professor, Department of Epidemiology, Karolinska Institutet, Stockholm

NICHD Stillbirth Collaborative Research Network (download this PowerPoint presentation, 1.4M)

Halit Pinar, MD, Associate Professor of Perinatology and Pediatric Pathology at Brown Medical School

A Pathologists Point of View: Establishing the Cause of Death (download this PowerPoint presentation, 54k)

Susan E. Crawford, MD, Department of Pathology, Northwestern University

PSANZ Classification s for Perinatal Mortality (download this PowerPoint presentation, 3.5M)

Vicki Fleandy, Mater Health Service, Brisbane, Australia

Stillbirth Classifications (download this PowerPoint presentation, 342k)

J. Frederik Froen, MD, Dr. of Medicine. Dr. of Philosophy., Dept. of Obstetrics/Gynecology, Dept. of Pediatric Research, The National Hospital, University of Oslo, Norway

Stillbirth – The Swedish Experience (download this PowerPoint presentation, 352k)

Karin Petersson, MD, PhD, Department of Obstetrics and Gynecology, Karolinska Hospital, Sweden

Stillbirths – Explained and Unexplained download this PowerPoint presentation, 542k)

Ruth C. Fretts, MD, MPH, Assistant Professor, Harvard Medical School

University of Southern California Stillbirth Experience (download this PowerPoint presentation, 104k)

March H. Incerpi, MD, Division of Maternal- Fetal Medicine, Keck School of Medicine, University of Southern California

Why Look? The Clinical Prospective

Michael Berman, MD, Clinical Professor of Obstetrics and Gynecology, Yale University School of Medicine, Found and President of Hygeia Foundation, Inc.

 

2004 STILLBIRTH RESEARCH ROUNDTABLE

LIST OF ATTENDEES

Medical Experts

Babill Stray-Pedersen, MD, PHD

Dept. of Gynecology/Obstetrics

The National Hospital, Norway

J. Frederik Frøen, 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