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

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 Rochester 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 the University of Rochester Saunders Medical Research Building, 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 Rochester parents to say that current protocols for doctors, medical examiners and law enforcement are inadequate and inconsistent, and leave grieving Rochester parents without answers and closure, and prevent lessons from being learned to prevent future deaths. 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, Rochester and Monroe 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 those 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 the parents that have lost their children, and should be unacceptable to all current and future parents,” said Senator Schumer. “When you lose a child, you deserve are answers – how, why. 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 bill, which has already passed the House, in the lame-duck session and get this done.”

Schumer said that Rochester and Monroe 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 the Monroe County infant mortality rate over the past decade was 7.3 deaths out of every 1,000 live births. Monroe County had the highest infant mortality rate in New York State as recently as 2012. In the City of Rochester alone, the infant mortality rate as of 2011 was 12.1 deaths for every 1,000 live births. Schumer noted that, while this is down from 2010’s rate of 13.9 deaths per 1,000, it is still significantly higher than the rest of New York State. According to data compiled by the Rochester Democrat & Chronicle Newspaper, between 2010 and 2012 there were 176 babies who died before their first birthday in Monroe County.

The Sudden 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 the federal Department of Health and Human Services (HHS), under the direction of the 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 was joined by parents who have experienced a miscarriage, stillbirth or infant loss; Dr. Nina Schor, University of Rochester Professor and Chair Department of Pediatrics Golisano Children’s Hospital; Lauren Deutsch, Executive Director of the Perinatal Network of Monroe County; and members of the New York SID Resource Center.

“When your child dies, you are swept up into a system that is not like anything on TV. You go from having a perfectly happy family one day- into complete chaos- and only followed by weeks and weeks of an agonizing wait for more information,” said Monroe County parent Kathy George, who suddenly lost her 6-year-old son Trevor in August. “Prior to Aug 21st of this year, I didn't have any knowledge of this bill or what protocols were in place for cases of the sudden unexpected death of a child. I had no need to know until Trevor did not wake up that day. Losing a child is hard enough to endure, and if this bill is passed, parents will have the peace of mind to know that everything that can and should be done is being done. During life's worst tragedy, our government policies should be there to do what is best for our child and help us in our darkest hour so we don't have to live our lives never knowing what happened to them or how to protect our other children.”

“Better information is the first step towards ending SIDS. Health justice means every baby – every life matters. SIDS occurs disproportionately in low income populations, and these babies deserve better,” said Lauren Deutsch, Executive Director of the Perinatal Network of Monroe County. “I firmly believe that this legislation creating standardized investigation and reporting practices will one day save lives.”

“As leaders of a peer support group for grieving families after a loss, we hear many situations about infant death,” said Melissa Ippolito, Stephanie Brown and JennRose Stremich, the Founders of Face 2 Face Rochester NY. “One common thread throughout are the questions: Why did this happen and how can we prevent this from happening again? This act for national standardized procedures is a sure-footed step in the right direction for grief-stricken parents. It will be a tremendous help in both the grieving and healing process.”

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