1. The role of MCH in Improving SUID Investigations
Teri Covington, MPH, Director
The National Resource Center for Child Death Review
Policy and Practice

2. CDC Research
Evidence supports change in reporting & classification of SUID in late 1990’s
Recent decline in SIDS offset by:
↑ unknown and unspecified causes
↑ other SUID causes
Recent studies have suggested a possible change in reporting or classification. CDC research has found that the decline in SIDS rates since 1999 is offset (or can be explained) by increasing rates of cause unknown/unspecified and other sudden, unexplained infant deaths (also referred to as SUID) such as those deaths attributed to overlaying, suffocation, and wedging,.
This change in reporting or classification of SUID can be explained by changes in how investigations are conducted and by how diagnoses of SUID are made; that is whether to assign SIDS as a cause of death or say accidental suffocation in bed or overlying.
/*******************
Some of this change in classification or reporting can be explained by states missing the deadline to amend cases. For example, in , many states including CA, TX, and NY reported fewer SIDS deaths than pending cases that became assigned “unknown cause” when they were not amended by the NCHS deadline.
Anecdotally, we have learned that there is differential reporting by DSIs in the way SUDI are assigned a cause of death. While some of the decline in the incidence of SIDS in recent years may be due in part to improved diagnosis of other causes of SUDI, many DSI reported a reluctance to attribute SUDI to SIDS.
*** So even though SIDS rates have declined, there is now growing concern about the accuracy, precision and consistency of the SIDS diagnosis.
Shapiro-Mendoza CK, Tomashek K, et. al. American Journal of Epidemiology. 2006; 163:

3. Characteristics of SIDS
SIDS occurs suddenly without warning, often during periods of sleep
Cause unknown after thorough investigation, review of medical records and autopsy
Not due to suffocation, aspiration, abuse or neglect
Peak incidence at 2 to 4 months of age
SIDS occurs suddenly without warning, often during periods of sleep
Not due to suffocation, aspiration, abuse or neglect
SIDS is a syndrome that it typically peaks between ages of 2 and 4 months of age.

5. Characteristics of Suffocation
In a sleeping environment
Overlay by persons, or
Wedging between bed and object, or
Covered by heavy bedding or object; or
Face pressed into soft bedding or other object.
Similar autopsy findings as SIDS

7. Mortality Rates Due to SIDS, U.S., 1980-2001
AAP Position Statement
Back to Sleep Campaign initiated
Change to ICD-10 Codes
Since 1990, the SIDS rates have declined 57% from 130 to 56 deaths per 100,000 live births in 2001.
Decline attributed to a decrease in prone sleeping following release of AAP sleep position statement in 1992 CLICK and the introduction of the national “Back-to-Sleep” education campaign in 1994 CLICK. [National Infant Sleep Position Study -- frequency of prone sleeping decreased from 70% in 1992 to 14% by 2000]
More recently CLICK, researchers have suggested that the continued decline may be due to a change in the way SIDS deaths are classified, but to date we have limited evidence to support this.
1992 -the American Academy of Pediatrics (AAP) recommends placing babies to sleep on their back or side to reduce the risk of SIDS.
1994 -the National Institute of Child Health and Human Development (NICHD) launches National Back-to-Sleep campaign.
1996 -AAP amends recommendation stating that the back sleep position offers lowest risk of SIDS.

8. Infant Mortality Rates Due to SIDS, SUID
Infant Mortality Rates Due to SIDS, SUID*, and Unknown/Unspecified Causes, U.S., 1989–1991 and 1995–2001
This slide provides evidence that some of the recent decline in SIDS deaths may be due to a changes in reporting or classification of SIDS and other SUID. Let’s me demonstrate this…
This figure shows infant mortality rates per 100,000 live births for SIDS and unknown/unspecified cause-of-death together with other sudden, unexplained infant deaths (SUID) such as suffocation due to overlaying, wedging, or choking on a foreign object. To help orient you we looked at rates from 1989 to You see a gap in the data from because there was no data available since NCHS they did not have resources to link birth and death certificates during this period. However, this was the period when the back to sleep campaign was initiated, so we have a clear picture of rates prior to this prevention effort and rates following the intervention.
So what do we see? What we found was that the rates for SIDS decreased significantly. while rates for Unknown and unspecified causes and other SUIDS increased significantly, especially when you compare the time prior to the back to sleep campaign to the mid to late 1990s. Also. the decline in SIDS decline in recent years seems less dramatic.
* SUID include accidental suffocation and strangulation in bed; other accidental suffocation and strangulation; and neglect, abandonment and other maltreatment syndromes.

9. Infant Mortality Rates Due to SIDS, SUID
Infant Mortality Rates Due to SIDS, SUID*, and Unknown/Unspecified Causes, U.S., 1989–1991 and 1995–2001
Now let’s look what happens when we combine SIDS with other SUID and unknown/unspecified causes. What we see is a flattened rate starting about 1998 and continuing through This flattening effect provides evidence of a change in reporting and/or classification. Thus, it is likely that SIDS cases in this later time period were being reported or classified as unknown/unspecified cause or suffocation.
* SUID include accidental suffocation and strangulation in bed; other accidental suffocation and strangulation; and neglect, abandonment and other maltreatment syndromes.

10. Risk Factors Seem Similar
Young maternal age
High parity
Late or no prenatal care
Low birth weight and preterm birth
Prenatal maternal smoking and substance abuse
Postnatal exposure cigarette smoke
Epidemiological studies have identified many factors associated with an increased risk of SIDS such as:
i.      young maternal age
ii.      high parity ( a lot of pregnancies)
iii.     late or no prenatal care,
iv.     Low Birth Weight
v.      preterm birth
vi.     maternal smoking and substance abuse during pregnancy,
vii.    postnatal exposure to environmental cigarette smoke,
These factors have also been associated with other causes of infant mortality and have proven to be difficult to modify in populations at risk.

11. Prone and side sleep positions Overheating Soft sleep surfaces
Loose bedding
Sharing a sleep surface
Modifiable risk factors
   i.      prone (OR 1.7 to 12.9) (PAR 38 to 82%) and side sleeping positions,
   ii.     overheating,
   iii.    soft sleep surfaces and loose bedding,
iv.    sharing a sleep surface
These risks factors are the focus of the Back to Sleep Campaign which was initiated in 1994 as a collaborative effort of the USPHS, AAP, SIDS Alliance, Association of SIDS Program Professionals

12. Without a Comprehensive Scene Investigation, the Risk Factors Cannot be Known
Difficult to make sense of the data and monitor trends.
Provide appropriate services to families.
Develop and implement effective prevention efforts.
Respond to advocates of certain positions.

13. MCH should actively advocate for policies and practices to ensure that comprehensive scene investigations, quality autopsies and reviews of maternal and infant health records are conducted of all SUIDs.

14. Learn about current practices for investigations: who, when and how.
Introduce the new SUID materials.
Promote coordination with coroner/medical examiner, law enforcement and social services.
Assist in data collection efforts.
Offer training resources in working with families.
Provide leadership in prevention efforts.

15. Work through your local Child Death Review or Fetal and Infant Mortality Review Team.

16. Death Review Teams
Retrospective review and discussion of all the circumstances leading to and including the death incident.
Reviews of case records from medical and health providers, mental health, law enforcement, human services, EMS, others.
Multi-disciplinary team membership.
Local and/or state level reviews.

17. The Objectives of Death Review
Accurate identification and consistent reporting on cause and manner of deaths.
Improved investigative systems.
Improved services for families and community.
Improved communication and linkages among agencies.
Improved systems of care for women, children and families.
Understanding of risk and protective factors in child deaths.
Changes in legislation, policy and practice, to prevent deaths and improve child health and safety.

18. Team Members Coroner Physicians Nurses Hospital staff Health care EMS
Public Health
Social Services
Law Enforcement
District attorney
Education
Mental Health
Advocates
Ad hoc
MCH Advocates
Clergy
Funeral Home

19. Records shared at a SUID Review
Autopsy reports
Scene investigation reports and photos
Interviews with family members
Child Care Licensing reports
EMS run reports
Emergency Department reports
Child’s health history
Prior CPS and DV history on child, caregivers and person supervising child at time of death
Background checks on person supervising child at time of death
Reports of home visits from public health or other services
Any information on prior deaths of children in family
Any information on prior reports that child had difficulty breathing
Downloaded information from apnea monitors

20. Team Discussion Regarding the Investigation
Who is the lead investigative agency?
Was the investigations coordinated with medical examiners, law enforcement and CPS?
Was there an autopsy? Was it comprehensive?
Was there a scene investigation?
Was there a scene recreation with photos?
Were there other investigations conducted?
What were the key findings of the investigations?
Does the team feel the investigation was adequate?
Is the investigation complete?
What more do we need to know?
Does the team have suggestions to improve the investigative system?

21. Share the new
SUIDI
with your
community’s
investigators

22. Sample Letter to State and Local Medical Examiners/Coroners
[ insert date ]
Dear [ insert name ],
Each year in the United States, 4,500 families experience the sudden, unexpected death of a precious baby. The data that is collected as part of scene investigations and the accuracy and consistency with which these deaths are classified is critical, not only in helping grieving families begin to cope with their loss but for public health professionals as they attempt to monitor national trends and develop prevention strategies.
[ insert personal story/opinion here ]
I can only imagine the difficult task you have in helping to identify the causes of these deaths and in sharing this information with grieving families. Thank you so much for all you do in providing this compassionate community service.
As you may be aware, the Centers for Disease Control and Prevention (CDC) began working with medical examiners, coroners, death scene investigators, emergency medical personnel, law enforcement, and SIDS parents to standardize and improve protocols for the national reporting of sudden, unexpected infant deaths (SUID). As a result, the CDC recently released the Sudden Unexplained Infant Death Investigation (SUIDI) Reporting Form. This valuable new tool is designed for state and local use in conducting infant death scene investigations.
To ensure proper and consistent use of the SUIDI Reporting Form, CDC has also developed a comprehensive training curriculum and materials for infant death scene investigations. These materials will be used to train investigators and death certifiers in how to consistently collect data at the death scene and accurately report their findings on the death certificate.
I am writing today to ask that you review these materials (if you haven’t already!) and consider adopting any portion of the materials that are not already included in your death scene investigation protocols. Proper and consistent use of these protocols will go along way toward ensuring that each and every family that experiences the tragic death of a baby in your jurisdiction receives a thorough, comprehensive and compassionate death scene investigation. I can assure you that the families experiencing these deaths, as well as the researchers trying to identify prevention strategies, would be ever grateful!
As I understand that quite often the staffing and funding resources needed to implement these thorough investigations are not available, I will also be advocating for increased funding at the state and local levels to support this important initiative.
Thank in advance for considering my request in the belief that every baby should live.
Sincerely,
[ insert your name and contact information ]
                             
firstcandle.org

23. Team Discussion on SUID Risk Factors
Place where child was sleeping or playing.
Position of child when found.
Type of bedding, blankets and other objects near child.
Faulty design of cribs, beds or other hazards.
Number of and ages of persons sleeping with child.
Obesity, fatigue, or drug/alcohol use by persons supervising or sleeping with child.
Exposure to tobacco.
Possibility of overheating?
Quality of supervision at time of death.
Family’s ability to provide safe sleep or play environment for child.
Prior child deaths or repeated reports of apnea episodes by caregiver.

24. Team Discussion and Action on Prevention
Provider Training and Education
Parent Training and Education
Community Education
Provision of Safe Cribs
Child Care Provider Training and Education
Prenatal Drug and Alcohol Treatment Services
Prenatal Smoking Cessation

25. For More Information 1-202-863-2587 1-800-656-2434