11.17.14

SCHUMER: RESEARCH & REPORTING ON SIDS & OTHER ‘SUDDEN DEATH IN YOUNG’ SYNDROMES IS WOEFULLY INADEQUATE, LEAVING GRIEVING BUFFALO PARENTS WITHOUT ANSWERS; BUFFALO INFANT MORTALITY RATE AMONG HIGHEST IN NATION – SENATOR & BUFFALO PARENTS OF CHILD VICTIMS URGE SENATE TO ACT ON BIPARTISAN BILL IN LAME-DUCK SESSION THAT WOULD HELP PREVENT FUTURE TRAGEDIES

Schumer: Bipartisan Bill Would Give Feds Authority to Require Medical Examiners, Doctors & Law Enforcement to Better Investigate and Track Cases of Sudden Deaths in Infants & Children, Provide Answers to Grieving Parents & Prevent Future Loss – Buffalo & Erie County Infant Mortality Rates Well Above State & National Averages

Schumer Calls For Senate to Pass Legislation That Has Already Passed the House of Representatives & Will Fill Gaps in Federal Reporting of Young Deaths, Improve Data Collection & Investigations, Enhance Training, Plus Improve Research


Schumer Stands With Buffalo Parents to Highlight That Stricter Protocols & More Accurate Data Could Decrease The Number of Tragic Deaths in Children & Infants – Would Also Provide Quicker Answers to Parents Who Lack Information About Cause of Death For Months, Even Years

Today, at Women & Children's Hospital of Buffalo, U.S. Senator Charles E. Schumer urged the Senate to pass bipartisan legislation in the lame-duck session of Congress that would require significant improvements to research, investigation techniques, and reporting protocols that are used following sudden unexplained death among infants and children. Schumer stood with impacted Buffalo parents to say that current protocols for doctors, medical examiners and law enforcement are inadequate and inconsistent, and leave grieving Buffalo parents without answers and closure. Current inconsistencies also make it difficult for medical professionals to study and attempt to prevent sudden unexpected death. According to the Sudden Unexplained Death in Childhood Program, there are more than 4,600 sudden unexpected infant deaths (SUID) each year nationwide, over 25,000 stillbirths, and 200 children between 1 to 4 years old who die without a clear cause for their death. In the most recent annual data, New York experienced 46 sudden infant deaths, 61 deaths of unspecified cause, and 17 due to accidental suffocation in bed. In addition, Buffalo & Erie County have infant mortality rates that are significantly higher than the state and national averages. Schumer highlighted the dire need for this legislation, which will standardize and fill the gaps in federal reporting of infant and childhood deaths, improve data collection and scene investigations following a child’s death, enhance training of law enforcement, medical examiners, and doctors that work on these cases, and improve research.

“Simply put, the United States lacks national guidelines, protocols and training on how to report, investigate, and research the cause of death in the thousands of cases of sudden unexpected infant and child deaths each year, including those here in Rochester. Inconsistent practices in investigation and cause-of-death determinations hamper our ability to monitor trends, determine the cause of death, pick out risk-factors or warning signs, and design programs that could help prevent future deaths. That is unacceptable to parents that have lost their children, and should be unacceptable to all current and future parents,” saidSenator Schumer. “When you lose a child, the least you deserve are answers. And for the bravest among us, like those parents here today, they deserve to know that their child’s death was not in vain. Luckily, there is a bipartisan bill that will overhaul this system, creating standardized procedures for handling these tragedies, and improving data collection to bolster research. I am calling on my Senate colleagues to pass this House-passed bill in the lame-duck session and get this done.”

Schumer said that Buffalo and Erie County, in particular, have infant mortality rates that are significantly higher than the state and national averages. According to the Centers for Disease Control and Prevention (CDC), the national infant mortality rate as of the most recent data in 2010 was approximately 6.1 deaths per every 1,000 live births. Schumer said that, according to the New York State Department of Health, the Erie County infant mortality rate over the from 2010 to 2012 was 8.8 deaths out of every 1,000 live births. TheSudden Unexpected Death Data Enhancement and Awareness Act, sponsored by Senator Sherrod Brown of Ohio, aims to fill gaps in federal reporting of infant and childhood deaths, enhance training, and improve research. The legislation will promote awareness about unexpected sudden death in early life, provide for continued development and updating of standard protocols and data collection related to stillbirths and sudden, unexpected deaths in infants and young children. The bill gives HHS, under the direction of CDC, the authority to carry out activities related to stillbirth, SUID and SUDC.

First, the legislation will improve reporting protocols for stillbirths and Sudden Unexpected Death among Infants and Children, leading to reliable data collection surrounding a child’s death. Currently, reporting protocols vary from state to state. Specifically, this legislation calls for the CDC to create a national standard protocol of data reporting that state health departments would follow. Schumer said that this is crucial for several reasons. Improved reporting provides data that better represents the true scope of these occurrences, which is step one on the road to identifying their causes. Schumer said this will help ensure parents have answers sooner than under the current system, and will help prevent future deaths for the same reason. Improved reporting could also help identify certain patterns within sudden unexpected death, such as sleeping positions or other tendencies of a child.

Second, the bill ensures that the CDC creates and disseminates a standard death scene investigation protocol, and requires the development of guidelines for a standard autopsy protocol for both sudden unexpected deaths in infants in children. This would include specific surveillance efforts to gather socio-demographic information, death scene investigation, clinical history, and autopsy information through existing surveillance systems. Schumer highlighted again that states and localities around the country all do this work differently, due to lack of national protocols. Schumer said that research on the cause of these deaths is extremely difficult until it is assured that these deaths are handled in a standardized way, and the information obtained in these investigations and autopsies is consistent.

Third, this legislation would enhance the training of law enforcement, medical examiners and doctors that work on these sudden infant and childhood death cases by increasing training activities for professionals, which would be updated no less than every five years. Schumer said that medical professionals and the law enforcement that handle these cases are doing a good work, but they need the support, resources and proper training in standardized procedures and regarding which information must be gathered.

Schumer will be joined by Buffalo parents who have experienced a miscarriage, stillbirth or infant loss; Deb Merrifield and Jan Walkden of SIDS of Western New York; and Christine Scott of the Perinatal Bereavement Network.

“Families who experience the loss of a child experience the toughest loss imaginable,” said Jan Walkden, Regional Coordinator for the Sudden Infant and Child Death Resource Center, the Western New York Satellite Office, a program of the Family Help Center. “Parents experience anger, sometimes guilt, and overwhelming sadness. But one of the hardest things families face is trying to find information and insight in a situation where there simply are no answers to the question: why? We need consistency of data collection and the ability to retrieve information to develop prevention strategies and reduce the incidence of unexpected death in infants and children. We appreciate Senator Schumer's advocacy on this important issue.”

“As a bereaved mother of a stillborn baby, and an advocate for many bereaved families, I feel that this bill will bring us closer to understanding why stillbirth and other unexpected deaths happen and how to prevent them. Organizations like the Western New York Perinatal Bereavement Network, Inc. rely on consistent, accurate data in order to continue our programs and promote awareness and prevention,” said Christine Scott, Executive Director of Western New York Perinatal Bereavement Network, and mother of Jacob Wesley Scott, who passed away in 2000.

“Sudden Infant Death Syndrome is a devastating event that all too often leaves families with many unanswered questions,” said Dr. Steve Turkovich, Chief Medical Officer for Women & Children’s Hospital of Buffalo. “As medical professionals, parents look to us for answers when their child is sick or injured. It is heartbreaking to not be able to provide answers to parents who have lost a child. This legislation will strengthen the partnership and collaboration amongst medical professionals who investigate these tragic events. It will provide us the tools to better understand of the causes of SIDS and help parents have some closure and begin the healing process. Thank you to Senator Schumer for fighting for passage of this important bill.”

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