SCHUMER ANNOUNCES THAT, AFTER HIS PUSH, LEGISLATION TO IMPROVE RESEARCH & REPORTING PROTOCOLS ON ‘SUDDEN DEATH IN THE YOUNG’ CLEARS CONGRESS, HEADS TO THE PRESIDENT’S DESK – SCHUMER URGES PRESIDENT TO SIGN BILL INTO LAW; WILL HELP PROVIDE ANSWERS FOR BUFFALO PARENTS & PREVENT FUTURE TRAGEDY

Schumer Recently Stood With WNY Parents to Call for Passage & 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

U.S. Senator Charles E. Schumer announced today that both the Senate and House have passed bipartisan legislation that would require significant improvements to research, investigation techniques and reporting protocols used to determine the cause of sudden unexplained death among infants and children. With passage secured in both chambers of Congress, the bill now heads to the President’s desk for his signature. Schumer today urged the President to sign the legislation and make it law. Schumer recently stood with impacted parents from Western New York to say that current protocols for doctors, medical examiners and law enforcement are inadequate and inconsistent from state to state, which leaves grieving parents without answers and closure and prevents lessons from being learned to prevent future deaths. According to the CDC, there are more than 4,600 sudden unexpected infant deaths (SUID) each year, more than 25,000 stillbirths nationwide, and an additional 200 children between 1 to 4 years old who die without a clear cause for their death. In the most recent available annual data, New York experienced 46 sudden infant deaths, 61 deaths of unspecified cause, and 17 due to accidental suffocation in bed.

Schumer highlighted the dire need for this legislation, which will fill the gaps in federal reporting of infant and childhood deaths, improve data collection and scene investigations surrounding a child’s death, enhance training of those law enforcement, medical examiners and doctors that work on these cases, and improve research. Schumer and these parents said that improved data collection and research is the first step in understanding the cause of these deaths and will hopefully help decrease the number of tragic deaths in children and infants, and ensure parents have accurate information, sooner.

“When a parent loses a child, the least that they deserve are answers to their question on what caused the tragedy. And from these facts we will learn about causes and prevention techniques to prevent future parents from suffering this unthinkable pain. So I am very pleased we passed this bill, which will help create national guidelines, protocols and training on how to report, investigate and research the far too many cases of sudden death in children. The last remaining hurdle to make this a reality is the President’s signature, and I am urging him to sign this bill into law as soon as possible so we can better prevent future tragedies here in Western New York, and across the nation” said Senator Schumer.

“I am overwhelmed that this bill will now make it to the President's desk to be signed into law! And I am so thankful to the support of our Congress, including Senator Schumer, who listened to the heart wrenching stories of parents and didn’t turn away but worked to understand the problems that exist in our system today that limit our ability to understand and prevent these deaths from occurring.  Our country is in dire need of standardized protocols for death scene investigations and comprehensive autopsies. This will ensure that our public health and research efforts are driven by data that is complete and consistent. In our darkest hour, each individual family expects and deserves this. The Sudden Unexpected Death Data Enhancement and Awareness Act addresses the critical limitations that exist in states across our country and will help provide answers to families and our nation overall,” said Laura Crandall, SUDC Foundation President, Cofounder and SUDC Parent.

The Sudden Unexpected Death Data Enhancement and Awareness Act aims to fill gaps in federal reporting of infant and childhood deaths, enhance training and improve research. The legislation promotes awareness about unexpected sudden death in early life, and provides 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 the Department of Health and Human Services (HHS), under the direction of the Centers for Disease Control and Prevention (CDC), the authority to carry out activities related to stillbirth, SUID and SUDC, and requires updates to protocols every five years.

First, the legislation improves 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 experts with data that better represents the scope of these occurrences, which is the first step to identifying their cause. Schumer said this will help ensure that parents who lose a child will have answers and information surrounding that death sooner than under the current system. More accurate reporting would also help identify certain patterns within sudden unexpected death, such as sleeping positions or other tendencies of a child, which could prevent future deaths.

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 sociodemographic 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 each case is handled in a standardized way, and that the information obtained in these investigations and autopsies is consistent.

Third, this legislation enhances 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.

“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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