SUID/SIDS Prevention
Every year in the United States, 26,000 families are devastated by stillbirth. In addition, there are 4,500 sudden, unexpected infant deaths (SUID), including Sudden Infant Death Syndrome (SIDS). Despite progress at reducing SIDS rates during the past decade, SIDS remains the leading cause of death for infants one month to one year of age.
In order to address these alarming statistics, First Candle brought together leading researchers, bereaved family members, health professionals and others to explore current research efforts and strategies for saving infant lives from March 23-25, 2009. The symposium concluded with a “Day on the Hill,” where participants visited with Congressional leaders to encourage lawmakers to support critical legislation and programming that will help us reach the goal of a future where all babies survive and thrive.
The Program Support Center and the Resource Center have collaborated to provide the following multimedia resources from the symposium:
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In this podcast, three parents join together in a candid discussion of their experiences of loss and the supports that they received from the medical and faith communities. They offer their advice to parents who have also lost a child and to the families and professionals who provide support to them.
Listen to the whole podcast (19:06), or visit the podcast page with annotated excerpts.Nicole and Paul Alston are the founders of the Skye Foundation, established in honor of their daughter Skye, with a mission to raise awareness of placental abruption and other bleeding disorders as they relate to pregnancy.
Allison Glover, C.H.E., is a community health educator and home business coach and has founded Garrett's Voice in memory of her son to offer trainings on risk reduction and bereavement support.
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In this podcast, Darryl Owens, M.Div., BCC, CT, sat down for a conversation with two families who have experienced perinatal loss. Together, the participants discuss the benefits and limitations of support from clergy, the church community, and individual relationships with God. Mr. Owens also offers advice to fellow clergy on how to provide the best support to bereaving congregants, as well as advice for individuals and families experiencing a loss.
Listen to the whole podcast (21:19), or visit the podcast page with annotated excerpts.
Mr. Owens is Women's Services Chaplain, grief counselor and Chaplain for the perinatal bereavement program at the University of North Carolina Hospitals in Chapel Hill, North Carolina, and a board member of the Association for Death Education and Counseling (ADEC).
In this podcast (5:52), Sherokee Ilse speaks about the importance of peer support programs.
Ms. Ilse is a bereaved parent, international speaker, and author of Empty Arms: Coping with Miscarriage, Stillbirth and Infant Death; Couple Communication After a Baby Dies; Remembering with Love: Messages of Hope for the First Year of Grieving and Beyond; and Miscarriage: A Shattered Dream. For more information see Babies Remembered and Wintergreen Press.
In this podcast, Ruth Fretts, M.D., M.P.H., speaks about researchers and parents joining together to address stillbirth. She covers risk reduction, including kick counting and individualizing a mother's risk in late pregnancy.
Dr. Fretts is board certified in Obstetrics and Gynecology from Queen's University. She is affiliated with Brigham and Women's Hospital, Boston, MA, and Newton-Wellesley Hospital, Newton, MA. She focuses on epidemiological research on specific causes of fetal death; maternal age and parity on birth outcomes; menopause; and operative hysteroscopy.
In this video, Darryl Owens, M.Div., BCC, CT, addresses an audience of primarily African American clergy with a rich presentation containing definitions, statistics and real-life anecdotes from his personal experience and that of the many families he has counseled.
Mr. Owens is Women's Services Chaplain, grief counselor and Chaplain for the perinatal bereavement program at the University of North Carolina Hospitals in Chapel Hill, North Carolina, and a board member of the Association for Death Education and Counseling (ADEC).
Suzanne Bronheim, Ph.D., is director of the SUID/SIDS project and senior policy associate at the National Center for Cultural Competence at Georgetown University. Her research helps serve children with chronic illness and disabilities and families who have experienced the sudden and unexpected death of an infant.
In her presentation, Dr. Bronheim outlines a range of cultural barriers to getting effective bereavement support, and associated mental health services, and advises the audience on the role clergy can play in getting the needed supports to effected families.
The faith community has a unique and special role in supporting those families experiencing the sudden or unexpected loss of a pregnancy, newborn child, or infant. In this presentation, Wendy Jones, director of the CYSHCN program at the National Center for Cultural Competence at Georgetown University, describes some of the ways that the faith-based community provides effective support, and misses the mark, when reacting to a community member's loss. Following a series of focus groups, the team is preparing a toolkit for the Faith-Based community to improve support services.
A detailed look at problems and opportunities in mental health care among African-Americans, including definitions of mental health and mental illness, disparities in mental health care delivery, cultural barriers to seeking care, cultural preconceptions about mental health based on race and faith, and patterns in mental health care needs and service delivery based on culture, race and socio-economic status.
Annelle Primm, M.D., M.P.H, is director of minority and national affairs for the American Psychiatric Association, as well as Associate Professor of Psychiatry at the Johns Hopkins University School of Medicine. She developed the documentary, "Black and Blue: Depression in the African-American Community," and is co-author of two books: Life in Color: Culture in American Psychiatry, and Disparities in Psychiatric Care: Clinical and Cross-Cultural Perspectives.
Nicole and Paul Alston lost their first-born child to stillbirth, and have experienced firsthand all of the emotions that were being discussed at the research symposium. The couple founded the Skye Foundation to raise awareness of issues surrounding stillbirth, perinatal grief, and the specific cause of their newborn's death, placental abruption.
In this presentation, Mrs. Alston presents her very poignant story in a way very few researchers can, and offers lessons from her experience seeking support from the family's clergy and fellow congregation members.
Rachel Moon, M.D., shares the results of an extensive study on racial disparities in sudden unexpected infant death. Sleep position and bed sharing are far more common contributing factors to SUID among African American families. Dr. Moon examines behavioral factors, reasoning and motivations that lead to this disparity, and makes suggestions for how to communicate with parents about how to minimize the risk factors.
Dr. Moon is an internationally recognized expert in SIDS. She is on the faculty of General and Community Pediatrics at Children's National Medical Center in Washington, serving as the director of Academic Development for the Goldberg Center for Community Pediatric Health, and Principal Investigator for the Center for Clinical and Community Research (CCCR) at Children's Research Center, National Children's Medical Center. She is also Professor of Pediatrics at the George Washington University School of Medicine and Health Sciences.
Robert Washington, Ph.D., M.Div., wraps up the clergy breakfast by reviewing and tying together the different presentations from that morning, providing his view of the particular challenges of addressing African American women of faith, and offering counsel to fellow clergy on how best to address the problem.
Dr. Washington is chaplain and Vice President of Counseling Services at Montgomery Hospice, a nonprofit hospice serving residents of Montgomery County, Maryland. He is a licensed clinical psychologist and ordained minister in the United Church of Christ and through his work in both mental health administration and the ministry, has developed a strong interest in the interface of psychology and spirituality. For the past 25 years, he has specialized in grief counseling - working with those who are ill, dying and/or bereaved, and training others to do likewise.
Yvonne Maddox, Ph.D., provides background on the National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH), including a summary of the work done by the institute on SIDS, highlights of recent work on SIDS reduction messaging, and an overview of partnerships in the endeavor, including an emerging partnership with members of the clergy.
Dr. Maddox is Deputy Director of the NICHD. In this position, she guides the organizations and programs of the Institute, advises the director on the $1.2 billion Institute budget, and oversees the extramural research program on child development, developmental biology, nutrition, AIDS, mental retardation, population issues, reproductive biology, contraception, pregnancy, and medical rehabilitation.