Open Letter from Dr. Cacciatore
An Open Letter to Concerned Citizens and Parents of Stillborn Infants
from MISS Foundation CEO & Founder, Joanne Cacciatore
The death of a child at any age and from any cause is tragic and overwhelming. It challenges families' sense of security and causes stressors in even the most stable households. The MISS Foundation (http://www.missfoundation.org) focuses on supporting all families after a child's death, despite age. We are not cause centered. The death of a child at any age is life's most devastating tragedy.
The purpose of these legislative pages is to focus on stillbirth. I am challenging a historically marginalized group of women and families. The dialogue addresses the pervasive attitudes in society, often minimizing the death of a baby just prior to or during birth.
Many other causes of child death have received public and media attention. Thus, funding to deal with infant and child death has been a part of federal and state programs for decades. Historically, stillbirth has not been a part of the research agenda. Until very recently (and not without many battles and even some political warring), stillbirth has been ignored as a public health problem, despite the fact that one in every 100 pregnancies will end in the stillbirth of a baby.
Up until my own child's death in 1994, there had been no "stillbirth" task forces or stillbirth advisory councils or stillbirth reduction committees. I had never even heard a story on our local news about stillborn infants...I never knew that a woman could really lose her baby at the end of her pregnancy for no identifiable cause. I did not know that stillborn babies, even those that die near, at, or post term, aren't counted by the Centers for Disease Control in infant mortality data. Simply, stillbirths never counted anywhere. And this is the ultimate woman's issue. How could it be that it's been so ignored?
A new media trend is emerging. National attention has turned to the MISS Foundation and other groups who are fighting to: 1) recognize and dignify the parents who are devastated upon the stillbirth of their baby, 2) reduce the number of stillbirths, 3) support research, 4) and provide bereavement care to families.
The MISS Foundation has helped to pass the MISSing Angels Bill passed in 14 states; and we're committed to all 50 by 2010.
Other changes that have recently taken place:
1) The State of Arizona has legislated a formal advisory council, The Unexplained Infant Death Advisory Council, a governor mandated group, charged with examining unexplained deaths from stillbirth to age three. This interdisciplinary team includes nurses, physicians, epidemiologists, emergency response personnel, and community members.
2) Because many families invest thousands of dollars to prepare for the arrival- then, sadly, the funeral- of their stillborn baby, Governor Janet Napolitano signed into law SB1003, a one-time tax exemption for families who experience stillbirth during the year in which their child was born.
3) The MISS Foundation's work has been featured in People Magazine, on CNN News' American Morning, and continues to be highlighted in books, magazines, and radio shows around the world.
4) Many of our MISS Foundation chapters have been in their local news; and now, even rap singers and movie producers are talking about stillbirth!
This is a very, very important time in history.
Stillbirth, for decades, has been overlooked and disregarded as the number one mechanism for child death. Estimates range from 25,000 to 39,000 stillbirths annually in the U.S. That is approximately 83 per day or 4 per hour. Stillbirth takes the lives of more infants than all other causes of deaths COMBINED!
Yet, these numbers have gone virtually unnoticed. Reports about national or state rates for "infant mortality" do not include stillbirth rates. Stillborn babies, despite gestational age or viability, are labeled "fetus" and are not regarded by public health departments, statisticians, or some researchers as an infant death. This attitude has been the driving force behind the complacency toward stillbirth in society.
While the situation is changing, much work remains. Stillborn infants and the women who endure the horror of giving death to their baby instead of life deserve equanimity and respect. These children, of whom 50% die for no diagnosable reason, are worthy of research dollars to determine cause and to reduce the numbers. Stillbirth has come out of the closet.
Watch the movement carefully; if you're interested, get involved. It is the voices of families affected by this tragedy that will compel change~ the voices that we use to speak for our children.
Fellow in Thanatology