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Legislators consider hurting those people who have already suffered the loss of a child, WHY?
I am a member of the SIDS Alliance, and so am extremely angry about this
I am a member of the SIDS Alliance, and so am extremely angry about this
[LAKE MARY, FL JANUARY 23, 2013] The Florida Senate Policy Committee will begin discussion today to wipe out the gains made over the past 40 years for families who suddenly lose a seemingly healthy baby under the age of one year.
Roy Bagley (Pasco county), SIDS parent and President of the Florida SIDS Alliance, a statewide non-profit 501(c)3 charity, expresses his deep concerns over the ramifications of the bills being presented this year. This is a very serious matter and extends far beyond just changing the term SIDS to SUID. It wipes out more than 40 years of education and training so families are treated fairly and justly. More than 200 babies die in Florida each year and the families never forget how professionals treat them when this loss occurs. The Florida Senate Policy Committee will discuss today the changing of the term SIDS for SUID and considers revising legislative findings and intent with respect to the sudden unexpected death of an infant under a specified age; defining the term 'sudden unexpected infant death'; revising provisions relating to training requirements for first responders; revising requirements relating to autopsies performed by medical examiners; requiring the Medical Examiners Commission to provide for the development and implementation of a protocol for the medicolegal investigation of sudden unexpected infant deaths; deleting references to the SIDS hotline and local SIDS Alliances, etc.
Charlene Melcher (Brevard county), a SIDS parent and Florida SIDS Alliance board member expresses what many feel needs to happen with this bill: It is so important that we get this right. I don't want any parent who is experiencing the absolute worst time of their lives to have additional pain added to it with unnecessary accusations. We were told by law enforcement officials 14 years ago that they didnt know what we did to our son. His outlook was healthy babies don't die. My son had an autopsy that showed absolutely nothing wrong with him. The only thing he did was go to sleep and not wake up.
The bill is slated to delete SIDS for a new term SUID. Sudden and Unexpected Infant Death (SUID) is a diagnosis made in cases in which autopsy does not reveal a definitive medical or traumatic cause of death and the circumstances surrounding the death suggest that there is an associated risk factor for dying, such as unsafe bedding or co-sleeping, or some other external factor, but the contribution of this factor cannot be determined with certainty. The Federal government and the CDC still recognize SIDS. In fact, of the 4,500 deaths in infants less than one year, over 2000 of the deaths were diagnosed as SIDS, while the other diagnoses of asphyxia, suffocation, and strangulation in bed do constitute most of the others. Still others remain undetermined (which by the way is the definition of SIDS).
SIDS parent and Florida SIDS Alliance board member, Lisa Sculley (Bradford county), sums it up well: Words mean something. Removing the designation of SIDS in this legislation and replacing it with the designation of SUID may not seem like it means anything to the legislators who are working on this bill. After all, SIDS and SUID sound like they mean the same thing -- they both indicate a cause of death of an infant whose mechanism of death remains unknown after a complete investigation. Nevertheless, removing SIDS as a designated cause of death in this legislation is a damaging step back for infant mortality. The connotation of SUID is much different than SIDS, for it leaves open the assumption that "something" or "someone" caused a child to die. While in some cases, this may have some merit, in most cases, it is completely untrue. By removing SIDS, the insinuation becomes that the parents or caregivers are somehow responsible for the death; in fact, their actions somehow caused the death.
SIDS is still the leading cause of death in babies 28 days and older up to a year of age. While there are many risk factors that can increase the RISK of SIDS, including prone position, adult bedding, fluffy bed materials, pillows, bedsharing, and smoking, among other things, these are all RISK FACTORS and not the CAUSE of SIDS. While I fully support the use of SUID in cases where there is some question of cause, and to be the umbrella for those types of infant death that cannot be defined as SIDS, it is not a replacement or alternate term for SIDS. The mere presence of a risk factor should not in and of itself rule out SIDS.
The substitution of the term SUID for SIDS may seem to be harmless on paper, but the effect of this "small" change needs to be considered. A parent who is told that their baby died of SIDS is being told that they did not cause their child to die; they may be told that certain factors did increase the risk to their child, but they are also told they are not at fault. To the community, they are innocent victims. In a SUID death, the cause is unknown or undetermined; the parents are told that the RISK FACTORS are perhaps the CAUSE of the baby's death; and the investigation is not closed. To the community, they perhaps are at fault for their baby's death. While some parents may indeed contribute to the risk to their child, and in some cases there is a need to use this designation, if used for every baby with any risk factor present, it will lead to greater suspicion by the police who will assume guilt, and to a greater guilt carried by parents who have already suffered enough. This is a step back from the education in sensitivity that has been accomplished over the last 15 years, and will do nothing to decrease the number of deaths, while increasing the burden by parents already heavily burdened. Words do make a difference. The CDC and medical authorities recognize SIDS as a viable and real cause of death of infants; our legislation should reflect that reality.
THIS BILL HAS THE POTENTIAL OF MAKING A REAL DIFFERENCE!!
Senate Bill 56 and House Bill 83 need to address more than just a name change the new law needs to address the REAL problem with sudden infant deaths in the State.
According to the Child Abuse Death Review committee in their report from 2012, twenty seven out of twenty-nine deaths of infants under the age of one year were associated with unsafe sleep environment.
http://www.flcadr.org/attach/sleepDeathsByCause.pdf
There are still two hundred and eleven others (TOTAL Infant Deaths in 2011 was 241 - 46 SIDS and 195 SUID) that are not addressed as abuse so do not fall under this committee. A vast majority not reviewed by this committee [195 out of the 241 (80%)] yet were classified as SUDI and now would fall under the categories that include unsafe sleep environment.
The mission of the Florida SIDS Alliance is to provide family support, fund research, and provide education about reducing SIDS/other infant deaths.
In collaboration with the Florida Department of Health and the Healthy Start Coalitions of Florida, the Florida SIDS Alliance has offered free classes and workshops related to the Safe to Sleep Education Campaign since 1993. Bunny Hamer (Seminole county and Vice President) and Roy Bagley (Pasco county and President) have taught these classes and workshops. Hundreds of professionals that work in Neonatal and Nursery units, child care providers, EMTs and Firefighters, home visitors, Healthy Start clients, parent and grandparents around the State have benefitted from these classes. Professional workshops to Train the Trainer have trained more than 100 in just the past two years alone so they can teach others to utilize the Safe Sleep guidelines developed by the NICHD (National Institute of Child Health and Human Development).
Safe to Sleep Public Education Campaign
The Florida SIDS Alliance recommends that SB 56 include language and that has parents acknowledge receipt of information (or refusal) about safe sleep practices by signature before discharge, whether from hospital or other birthing center.
Other state have already enacted such legislation.
Pennsylvania Act
Act of Oct. 19, 2010, P.L. 513, No. 73 Cl. 23 - SUDDEN INFANT DEATH SYNDROME EDUCATION AND PREVENTION PROGRAM ACT - ENACTMENT
Nebraska law
Nebraska Legislature
The citizens of Florida deserve the best. The Florida SIDS Alliance continually strives to uphold the motto In the belief that every baby should live.
Board members are meeting with Representative David Santiago on Friday at 10 AM in his Deltona office.
For more information on the Florida SIDS Alliance or members named above
Roy Bagley, Charlene Melcher, Lisa Sculley or Bunny Hamer please call our
TOLL FREE HOTLINE at 800 SIDS FLA (800)743-7352.
Roy Bagley (Pasco county), SIDS parent and President of the Florida SIDS Alliance, a statewide non-profit 501(c)3 charity, expresses his deep concerns over the ramifications of the bills being presented this year. This is a very serious matter and extends far beyond just changing the term SIDS to SUID. It wipes out more than 40 years of education and training so families are treated fairly and justly. More than 200 babies die in Florida each year and the families never forget how professionals treat them when this loss occurs. The Florida Senate Policy Committee will discuss today the changing of the term SIDS for SUID and considers revising legislative findings and intent with respect to the sudden unexpected death of an infant under a specified age; defining the term 'sudden unexpected infant death'; revising provisions relating to training requirements for first responders; revising requirements relating to autopsies performed by medical examiners; requiring the Medical Examiners Commission to provide for the development and implementation of a protocol for the medicolegal investigation of sudden unexpected infant deaths; deleting references to the SIDS hotline and local SIDS Alliances, etc.
Charlene Melcher (Brevard county), a SIDS parent and Florida SIDS Alliance board member expresses what many feel needs to happen with this bill: It is so important that we get this right. I don't want any parent who is experiencing the absolute worst time of their lives to have additional pain added to it with unnecessary accusations. We were told by law enforcement officials 14 years ago that they didnt know what we did to our son. His outlook was healthy babies don't die. My son had an autopsy that showed absolutely nothing wrong with him. The only thing he did was go to sleep and not wake up.
The bill is slated to delete SIDS for a new term SUID. Sudden and Unexpected Infant Death (SUID) is a diagnosis made in cases in which autopsy does not reveal a definitive medical or traumatic cause of death and the circumstances surrounding the death suggest that there is an associated risk factor for dying, such as unsafe bedding or co-sleeping, or some other external factor, but the contribution of this factor cannot be determined with certainty. The Federal government and the CDC still recognize SIDS. In fact, of the 4,500 deaths in infants less than one year, over 2000 of the deaths were diagnosed as SIDS, while the other diagnoses of asphyxia, suffocation, and strangulation in bed do constitute most of the others. Still others remain undetermined (which by the way is the definition of SIDS).
SIDS parent and Florida SIDS Alliance board member, Lisa Sculley (Bradford county), sums it up well: Words mean something. Removing the designation of SIDS in this legislation and replacing it with the designation of SUID may not seem like it means anything to the legislators who are working on this bill. After all, SIDS and SUID sound like they mean the same thing -- they both indicate a cause of death of an infant whose mechanism of death remains unknown after a complete investigation. Nevertheless, removing SIDS as a designated cause of death in this legislation is a damaging step back for infant mortality. The connotation of SUID is much different than SIDS, for it leaves open the assumption that "something" or "someone" caused a child to die. While in some cases, this may have some merit, in most cases, it is completely untrue. By removing SIDS, the insinuation becomes that the parents or caregivers are somehow responsible for the death; in fact, their actions somehow caused the death.
SIDS is still the leading cause of death in babies 28 days and older up to a year of age. While there are many risk factors that can increase the RISK of SIDS, including prone position, adult bedding, fluffy bed materials, pillows, bedsharing, and smoking, among other things, these are all RISK FACTORS and not the CAUSE of SIDS. While I fully support the use of SUID in cases where there is some question of cause, and to be the umbrella for those types of infant death that cannot be defined as SIDS, it is not a replacement or alternate term for SIDS. The mere presence of a risk factor should not in and of itself rule out SIDS.
The substitution of the term SUID for SIDS may seem to be harmless on paper, but the effect of this "small" change needs to be considered. A parent who is told that their baby died of SIDS is being told that they did not cause their child to die; they may be told that certain factors did increase the risk to their child, but they are also told they are not at fault. To the community, they are innocent victims. In a SUID death, the cause is unknown or undetermined; the parents are told that the RISK FACTORS are perhaps the CAUSE of the baby's death; and the investigation is not closed. To the community, they perhaps are at fault for their baby's death. While some parents may indeed contribute to the risk to their child, and in some cases there is a need to use this designation, if used for every baby with any risk factor present, it will lead to greater suspicion by the police who will assume guilt, and to a greater guilt carried by parents who have already suffered enough. This is a step back from the education in sensitivity that has been accomplished over the last 15 years, and will do nothing to decrease the number of deaths, while increasing the burden by parents already heavily burdened. Words do make a difference. The CDC and medical authorities recognize SIDS as a viable and real cause of death of infants; our legislation should reflect that reality.
THIS BILL HAS THE POTENTIAL OF MAKING A REAL DIFFERENCE!!
Senate Bill 56 and House Bill 83 need to address more than just a name change the new law needs to address the REAL problem with sudden infant deaths in the State.
According to the Child Abuse Death Review committee in their report from 2012, twenty seven out of twenty-nine deaths of infants under the age of one year were associated with unsafe sleep environment.
http://www.flcadr.org/attach/sleepDeathsByCause.pdf
There are still two hundred and eleven others (TOTAL Infant Deaths in 2011 was 241 - 46 SIDS and 195 SUID) that are not addressed as abuse so do not fall under this committee. A vast majority not reviewed by this committee [195 out of the 241 (80%)] yet were classified as SUDI and now would fall under the categories that include unsafe sleep environment.
The mission of the Florida SIDS Alliance is to provide family support, fund research, and provide education about reducing SIDS/other infant deaths.
In collaboration with the Florida Department of Health and the Healthy Start Coalitions of Florida, the Florida SIDS Alliance has offered free classes and workshops related to the Safe to Sleep Education Campaign since 1993. Bunny Hamer (Seminole county and Vice President) and Roy Bagley (Pasco county and President) have taught these classes and workshops. Hundreds of professionals that work in Neonatal and Nursery units, child care providers, EMTs and Firefighters, home visitors, Healthy Start clients, parent and grandparents around the State have benefitted from these classes. Professional workshops to Train the Trainer have trained more than 100 in just the past two years alone so they can teach others to utilize the Safe Sleep guidelines developed by the NICHD (National Institute of Child Health and Human Development).
Safe to Sleep Public Education Campaign
The Florida SIDS Alliance recommends that SB 56 include language and that has parents acknowledge receipt of information (or refusal) about safe sleep practices by signature before discharge, whether from hospital or other birthing center.
Other state have already enacted such legislation.
Pennsylvania Act
Act of Oct. 19, 2010, P.L. 513, No. 73 Cl. 23 - SUDDEN INFANT DEATH SYNDROME EDUCATION AND PREVENTION PROGRAM ACT - ENACTMENT
Nebraska law
Nebraska Legislature
The citizens of Florida deserve the best. The Florida SIDS Alliance continually strives to uphold the motto In the belief that every baby should live.
Board members are meeting with Representative David Santiago on Friday at 10 AM in his Deltona office.
For more information on the Florida SIDS Alliance or members named above
Roy Bagley, Charlene Melcher, Lisa Sculley or Bunny Hamer please call our
TOLL FREE HOTLINE at 800 SIDS FLA (800)743-7352.
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