Giving Voice to a Silent Epidemic: SIDS and Other Sleep-Related Infant Death in Baltimore City

Giving Voice to a Silent Epidemic: SIDS and Other Sleep-Related Infant

Death in Baltimore City Stephanie Strauss Regenold, MD, MPH Senior Advisor Babies Born Healthy Initiative Bureau of Maternal & Child Health Baltimore City Health Department stephanie.regenold@baltimorecity.gov

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Overview

BCHD’s Birth Outcomes Initiative Definitions Epidemiology, Etiology, and Risk Factors Recommendations Parent Education

B’more for Healthy Babies: BCHD’s New Initiative

Bold new initiative by the Baltimore City Health Department & The Family League of Baltimore. Multi-year grant from CareFirst Blue Cross/Blue Shield to improve birth outcomes in Baltimore City. Strategic approach to affect change on all levels- policy, service, community and individual levels.

B’more for Healthy Babies: BCHD’s New Initiative

Our vision: All of Baltimore’s babies are born healthy weight, full term, and ready to thrive in healthy families. Components: Intensive efforts in high-risk neighborhoods to connect people to services. Citywide mass media campaigns. Policies to improve screening and education.

B’more for Healthy Babies: BCHD’s New Initiative

128 babies under the age of one died in Baltimore City in 2009. Baltimore has 4th worst infant mortality rate in US: The national rate is 6.9 deaths per 1000 live births. Baltimore’s rate is 12.1 deaths per 1000 live births. African American: 14.3 per 1,000 White: 7.3 per 1,000

B’more for Healthy Babies: BCHD’s New Initiative

The leading causes of infant mortality in Baltimore are: #1 Prematurity and low birth weight complications #2 SIDS and unsafe sleep conditions #3 Birth defects Our First Campaign Addresses Safe Sleep.

Definitions: Sudden Infant Death Syndrome (SIDS)

The sudden death of an infant younger than 1 year of age, that remains unexplained after a thorough case investigation, including: autopsy death scene investigation clinical history review No cause of death is determined. Manner of death is “Natural.”

Definitions: Sudden Unexplained Infant Death (SUID), or Sudden

Unexplained Death in Infancy (SUDI)

No cause of death able to be determined. Infant found in an unsafe sleeping environment: on an adult mattress or sofa sleeping with another adult or child sleeping on the stomach Inconclusive for asphyxia. Manner of death is “Undetermined.” Coded as SIDS for Vital Statistics.

CDC

gov/SIDS/SUID, 2009

Case #1

A 22-year old single African American woman lived in an apartment with her three children (ages 3 months, 2 years, and 4 years). She fell asleep on the couch with her 3-month-old. When she awoke 2 hours later, the baby was unresponsive. The EMS team was unable to resuscitate the baby.

SIDS Epidemiology

SIDS is the 3rd leading cause of infant mortality in the US, and the 2nd leading cause of death in Baltimore City. It is the leading cause of postneonatal mortality nationally and locally. Over 2,000 babies die in the US each year from SIDS. Peak incidence occurs when a baby is between 2 and 4 months.

SIDS Epidemiology: Established Risk Factors

Prematurity and/or low birth weight African American Native American Male sex Young maternal age Late or no prenatal care High parity

SIDS Epidemiology: Established Risk Factors

Maternal drug use during pregnancy Maternal smoking during pregnancy Environmental tobacco smoke Overheating Bed sharing Prone/side sleep position Soft bedding

Case #2

A 6-month-old girl was sleeping in an adult bed with her 10-year-old brother. When their mother checked in on them, the baby was not breathing and was cold and stiff to the touch. The boy’s leg was resting on top of the baby’s head. EMS was called and resuscitation efforts were started but were unsuccessful.

SIDS Epidemiology: Baltimore City

Deaths per 1,000 live births

Baltimore City - BCHD analysis of data from the Maryland VSA, MD - Maryland Vital Statistics Reports, U.S. - NCHS Vital Statistics Reports

SIDS

SIDS Etiology: Triple Risk Model

Infant at Critical Development Period

Environmental Factors

Genetic Predisposition

Filiano JJ and Kinney HC, Biol Neonate, 65:194-197, 1994

SIDS Etiology: Critical Development Period

Immature respiratory and autonomic nervous system Delayed neuronal maturation Poor sleep arousal responsiveness

Moon RY, et.al. Lancet. 2007;370:1578-1587.; Moon RY, Fu LY. Pediatrics in Review. 2007;28(6).

SIDS Etiology: Genetic Factors

Serotonin receptor and transporter abnormalities that affect arousal response Polymorphisms in genes that effect ANS development Abnormalities in the Na+ and K+ channels that are associated with prolonged QT syndrome Complement gene deletions and IL-10 gene polymorphisms

Moon RY, et.al. Lancet. 2007;370:1578-1587.; Moon RY, Fu LY. Pediatrics in Review. 2007;28(6).

SIDS Etiology: Environmental Factors

Prone and side sleeping positions Smoking during pregnancy Exposure to smoking after birth Bed sharing Use of soft sleep surfaces (adult bed, sofas) Presence of soft objects and loose bedding (toys, pillows, blankets and comforters) Overheating

AAP Task Force on SIDS. Policy Statement. October 2005.

SIDS Etiology: Rebreathing Theory

Infants in certain sleep environments are more likely to trap exhaled CO2 around the face: Lie prone and near-face-down/face-down Soft bedding Tobacco smoke exposure Infants rebreathe exhaled CO2 : CO2 ? & O2 ?. Infants die if they cannot arouse/respond appropriately.

Kinney HC, Thach BT. NEJM 2009;361:795-805.

SIDS Etiology: Proposed Causal Pathway

SIDS

Pregnancy related risk factors (low birth weight, smoking)

Genetic risk factors

Vulnerable infant (impaired autonomic regulation)

At risk age group

Environmental risk factors (sleep position, bed sharing, thermal stress, head covering, etc.)

Mitchell EA, Acta Paediatrica, 2009

SIDS in Baltimore City: Common Risks

Stomach sleeping Bed sharing (>75%) Soft bedding Smoke exposure

AAP Infant Sleep Recommendations

Additional Safe Sleep Recommendations

No smoke exposure No overheating Consider a pacifier

Alone…

Not with Mom, Dad, or anyone else. Baby’s sleep area should be close to, but separate from, where parents sleep.

SIDS Risk and Infant Bed Sharing

Earlier studies showed increased risk associated primarily with bed sharing among smoking mothers. More recently, two European studies showed increased risk for younger infants even among non-smoking mothers: European Concerted Action on SIDS (Carpenter, 2004) – under 8 weeks Scotland (Tappin, 2005) – under 11 weeks Germany (Vennemann, 2005) – risk was independent of age, independent of smoking. . England (Blair, 2009) – bed sharing on bed or couch had almost 3 times higher risk of SIDS; 10 times higher with recent drug or alcohol use .

SIDS Risk and Infant Bed Sharing

Other factors that increase risk: Multiple bed sharers Bed sharing with other children Parent consumed alcohol or is overtired Infant between both parents Sleeping on sofas or couches Returning the infant to his/her own crib is not associated with increased risk. No studies have ever shown a protective effect of bed sharing on SIDS.

Why do Parents Bed Share

Safety Can keep close watch on baby Belief that “crib death” occurs in crib Convenience Feeding Checking on baby Comfort Baby sleeps better Mother sleeps better Bonding Space/availability of crib

Bed Sharing Has Become More Popular

Renewed popularity of breastfeeding. Bed sharing all night long has more than doubled in the past 10 years from 6% to 13% (Willinger M, 2003, National Infant Sleep Position Survey). More recent study: 1/3 bed share in first 3 months, 27% at 12 months (Hauck F, 2009, Infant Feeding Practices Study II). Higher numbers in low SES, certain ethnic groups (African Americans, Latinos) - more than 50% may be bed sharing all night long.

Shhh

..My...My Child Is Sleeping (in My Bed, Um, With Me) Child Is Sleeping (in My Bed, Um, With Me)

“Ask parents if they sleep with their kids, and most will say no. But there is evidence that the prevalence of bed sharing is far greater than reported. Many parents are ''closet co-sleepers,'' fearful of disapproval if anyone finds out, notes James J. McKenna, professor of anthropology and director of the Mother-Baby Behavioral Sleep Laboratory at the University of Notre Dame.”

By TARA PARKER-POPE Published: October 23, 2007

Why is Bed Sharing Risky

Soft bedding, pillows, comforters No safety standards for adult beds Overheating Risk of entrapment

…on the Back…

Not on the stomach or side On the back every time the baby is laid down to sleep

Pre-AAP recommendation Post-AAP BTS Campaign (began in 1994)

Sleep Position Source: NICHD Household Survey SIDS Rate Source: National Center for Health Statistics, CDC

Prone Prevalence Rates Among Black Infants, US

National Center for Health Statistics, National Infant Sleep Position data

Why do parents place their babies prone

Comfort Baby sleeps longer, doesn’t awake easily Flattened Skull (plagiocephaly) Safety Concern about choking

Why is Prone Sleeping Risky

Babies sleep deeper, experience less movement, and are less arousable when prone. Rebreathing theory: carbon dioxide gets trapped around the mouth and nose. Risk is higher when infant is used to back sleeping. Risk of side sleeping similar to prone.

Prone Sleeping and Aspiration Risk

Being on the back is actually less risky for aspiration: secretions pool in the back of the throat, near the esophagus.

Prone Sleeping and the NICU

Premature babies are often placed prone to improve respiratory mechanics. Parents are likely to continue this practice at home. Teaching and modeling appropriate sleep position may not occur in the NICU. 52% of NICU nurses promoted supine sleeping at discharge (Aris 2006) Recommendation: Place all premature babies supine when respiratory dynamics are stable, well before anticipated discharge. Parents should be taught and shown to place babies supine during sleep before discharge.

Aris C, et.al. Adv Neonatal Care. 2006;6(5):281-294.

…in a Crib

A crib, bassinet, or portable crib which meets safety standards No pillows, blankets, stuffed animals, toys, bumpers

Why a Firm Sleep Surface

Soft or loose bedding carries 5 times the risk of SIDS as firm bedding. Sleeping on the stomach on soft or loose bedding carries 20 times the risk of SIDS than those infants who slept on their backs on firm bedding. Infants should not be placed to sleep on couches, cushioned chairs, beanbag chairs, sofas, waterbeds, air mattresses, memory foam mattresses, or lamb skins.

Additional Recommendations: Avoid Tobacco Smoke

In utero tobacco exposure increases the risk of SIDS: Possibly related to effect on birth weight Prenatal tobacco exposure associated with arousal defect Post partum exposure to tobacco smoke also increases the risk of SIDS.

Additional Recommendations: Avoid Overheating

Dress infant according to room temperature. Keep temperature comfortable for a lightly clothed adult. Use sleeper or sleep sack. If a thin blanket is used—tuck it in on 3 sides to keep at chest level or below. Don’t over-bundle.

Additional Recommendations: Consider Pacifier Use While Sleeping

Recommendation added in 2005 after multiple studies showed an independent protective effect. Possible mechanisms: Lower arousal threshold Airway patency Sleep position Specific Recommendations: Introduce around 1 month of age or after breastfeeding is established Use as infant is being put down to sleep Do not force Don’t have to reintroduce if it falls out

Other Considerations: “Tummy Time”

Persistent flat spots on an infant’s head, positional plagiocephaly, can be caused by repeated time in one position. Flat spots usually disappear in the months after learning to sit up. To help reduce flat spots: Daily ‘Tummy Time’ while awake and supervised. Alternate end of crib where baby’s head is placed to sleep, or rotate position of crib. Limit amount of time baby spends in car seats, carriers, etc.

Other Considerations: Breastfeeding

May be associated with reduced risk of SIDS: Breastfed infants are more arousable at 2-3 months. Some studies show protective effect, others none. Mothers can breastfeed successfully without bed sharing.

Moon FY, et.al. Lancet. 2007;370:1578-1587

Other Considerations: Positioners & Monitors

Wedges, blanket rolls can be a potential suffocation risk. Use of home monitors does not prevent SIDS: In certain situations a home monitor may be ordered by the physician for apnea, but these monitors do not prevent SIDS.

Safe Sleep Education for Parents and Caregivers

MUST: Be addressed early and often. Help parents prepare to counter contrary advice they receive. Help parents prepare to insist on consistent provision of a safe sleep environment when others care for the infant (grandparents, babysitters, child care providers, family members). Be modeled by respected and credible role models.

Gallup Poll 2006, Top List of Most Honest and Ethical Professionals

Nurses as Role Models

Nurses can model SIDS risk-reduction techniques to ensure that families know how to reduce SIDS risk: Nurses who placed infants to sleep on their backs during the postpartum hospital stay changed parents’ behaviors significantly (Colson, 2002) The most critical period during which nurses can influence parents’ behavior is during the 24 to 48 hours following delivery.

Knowledge vs

Practice

1999 American Academy of Pediatrics study (Peeke et el) 97% of nurses reported awareness of back sleeping recommendation 67% followed the recommendation The majority cited “experience” or “the potential adverse consequences of the back position” as their reason for disregarding the recommendation 2004 survey (Bullock et al) 96% of nurses reported awareness of back sleeping recommendation 75% reported using either side position or a mixture of side and back positioning Most nurses thought side sleeping was still acceptable Nursery staff do not uniformly recommend the back sleeping position.

Our Campaign: Beyond Knowledge to Behavior Change

Addresses issues of complacency, convenience Three Baltimore mothers tell their own stories about safe sleep and the choices they would make if they could go back and make them again.

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Sleep Safe Campaign: Components

Bus, radio, transit ads Posters, door hangers, rack cards, magnets, onesies, t-shirts News coverage on TV and radio

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Sleep Safe Campaign: Components

Powerful video featuring real stories of the three Baltimore mothers shown at birthing hospitals, the courthouse (jury duty), home visits. Discussion guide to help providers lead a discussion with clients before and after the video.

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Sleep Safe Campaign: Components

Powerful video featuring real stories of the three Baltimore mothers shown at birthing hospitals, the courthouse (jury duty), home visits. Discussion guide to help providers lead a discussion with clients before and after the video.

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