February 2006 E-zine

The Georgia SIDS Project E-Zine is an on-line educational update offered monthly by the Georgia Sudden Infant Death Information, Referral and Support Project, an affiliate of First Candle/SIDS Alliance. To comment on this issue, request additional information, refer families in need of support, make a donation or be added or removed from the list please contact us at gasids@mindspring.com or call 678-342-3360 or through Powerline at 1-800-822-2539.

This publication is made available through the generous donation of friends and supporters of our program.

Volume 2 - Issue Number 2, February 2006

1. Georgia SIDS Project is sponsoring a Spring Training Conference “Grief, Grieving and Grief Support Training” focused on the initial period following a miscarriage, stillbirth, or child death. The conference, planned for April 27, 2006 at Clayton College and State University will feature Charlie Walton, noted author and speaker, The Conference is targeted at Georgia nurses, clergy, death scene investigators and others. Specific skills for nurses and other medical personnel, clergy, funeral home directors, first responders such as police and coroners, social service staff and DFACS investigators. CEU’s have been applied for. The conference will be followed by a memorial program for professionals and parents to remember our children. Family members are invited to join us for the day, the afternoon sessions only or the memorial service. To review the conference agenda and register go to www.sidsga.org

2. Major epidemiological changes in sudden infant death syndrome: A 20-year population-based study in the UK Blair PS, Fleming PJ. Et al in 1-18-06 Lancet. Results of case-control studies in the past 5 years suggest that the epidemiology of sudden infant death syndrome (SIDS) has changed since the 1991 UK Back to Sleep campaign. The campaign's advice that parents put babies on their back to sleep led to a fall in death rates. Drs. Fleming and Blair used a longitudinal dataset to assess these potential changes. Population-based data from home visits have been collected for 369 consecutive unexpected infant deaths (300 SIDS and 69 explained deaths) in Avon over 20 years (1984–2003). Data obtained between 1993 and 1996 from 1300 controls with a chosen “reference” sleep before interview have been used for comparison. Over the past 20 years, the proportion of children who died from SIDS while co-sleeping with their parents, has risen from 12% to 50% (p<0·0001), but the actual number of SIDS deaths in the parental bed has halved (p=0·01). The proportion seems to have increased partly because the Back to Sleep campaign led to fewer deaths in infants sleeping alone—rather than because of a rise in deaths of infants who bed-shared, and partly because of an increase in the number of deaths in infants sleeping with their parents on a sofa. The proportion of deaths in families from deprived socioeconomic backgrounds has risen from 47% to 74%, the prevalence of maternal smoking during pregnancy from 57% to 86%, and the proportion of pre-term infants from 12% to 34%. Although many SIDS infants come from large families, first-born infants are now the largest group. The age of infants who bed-share is significantly smaller than that before the campaign, and fewer are breastfed. Factors that contribute to SIDS have changed in their importance over the past 20 years. Although the reasons for the rise in deaths when a parent sleeps with their infant on a sofa are still unclear, we strongly recommend that parents avoid this sleeping environment. Most SIDS deaths now occur in deprived families. To better understand contributory factors and plan preventive measures we need control data from similarly deprived families, and particularly, infant sleep environments.

3. Advocacy Action needed on behalf of National Children’s Study. The members of the Federally Chartered Advisory Committee to the National Children’s Study, as individuals, have affixed their names to this message to express that we are deeply troubled to learn that the White House through its Office of Management and Budget announced this week that the National Children’s Study will receive no further funding after FY 2006 and that planning and implementation of the Study will cease later this year. No funds are included in the President’s budget for FY 2007 for the National Children’s Study. The National Children’s Study planning activities that are ongoing in FY 2006 will be brought to a close by the end of the fiscal year. There are no plans for the NIH to continue the full scale study in FY 2007. (NIH Office of Budget, FY 2007 Budget, February 6, 2006). This directive is in direct conflict with the specific instructions of both the House and Senate in each and every fiscal year appropriations report since 2000, including Senate Appropriations Committee Report 109-103 and House Appropriations Committee Report 109-143, in 2006. The Children’s Health Act of 2000 authorized the development and implementation of a large longitudinal study of children to affect the major causes of childhood illness such as premature birth, asthma, obesity, preventable injury, autism, developmental delay, mental illness, and learning disorders. These disorders, among many other high frequency diseases that afflict children, result from the interaction of multiple biologic, genetic, chemical, social and behavioral factors that combine to determine health. The National Children’s Study is prepared to enroll a representative sample of America’s children (approximately 100,000 from over 100 locations throughout the U.S.) in order to identify causes and develop treatments of specific diseases, and develop population-based intervention strategies to prevent illness and ameliorate the impacts of poverty and substandard environments on children’s growth, development, and mental health. The Act designated the Director of the National Institute of Child Health and Human Development (NICHD) to spearhead this initiative as a broad based collaboration of federal agencies. Since 2000, the contributions of over 2500 scientists and community members from across the country have been sought and incorporated into a Study Plan that defines research questions, hypotheses, and critical exposure and outcome measures beginning before pregnancy and continuing throughout the life cycle of children. In 2005, the Study designated the first Vanguard (pilot) centers in seven sites throughout the United States and created a coordinating center to implement the study. In 2006, the Study plans to finalize the protocol in order to commence recruitment of the first participants by the end of 2007. The members of the Federal Advisory Committee to the National Children’s Study stand ready to do whatever it will take to make the Study a reality. Please add to their voices by calling the President, the Secretary of HHS, and ultimately, your Congressperson, to reverse this wrong to America’s children and restore the 69 million dollars needed in FY 2007 to implement the National Children’s Study and support funding for the Study. America’s children deserve no less.

4. Preterm Delivery and Age of SIDS Death. Halloran DR, Alexander GR Ann Epidemiol. 2006 Jan 12; The aim of the study was to (i) reexamine risk factors for sudden infant death syndrome (SIDS) and (ii) describe the relationship between length of gestation and age at death from SIDS. Methods: To evaluate risk factors for SIDS, we used multivariable logistic regression and included maternal demographic characteristics, maternal health and behavioral factors, and infant characteristics, including fetal growth, using US national linked birth and death files from 1996 to 1998. We used multivariable linear regression with mean postnatal age of death as the outcome of interest, controlling for the factors listed (referent length of gestation, 40 to 41 weeks). Results: The crude SIDS rate was 0.7 deaths/1000 live births (8199 deaths). Length of gestation was a strong risk factor for SIDS, with the adjusted odds ratio (OR) greatest at shorter gestations: 28 to 32 weeks (OR, 2.9; 95% confidence interval, 2.6-3.2). Infants with gestations of 22 to 27 and 28 to 32 weeks died at mean ages of 20.9 (SD = 0.8) and 15.3 (SD = 0.5) weeks, respectively (p </= 0.002). Term infants (40 to 41 weeks) died of SIDS at an adjusted mean age of 14.5 (SD = 0.4) weeks.

Conclusions: Preterm birth continues to be a strong risk factor for SIDS after controlling for fetal growth. With increasing gestational age, mean age of SIDS death decreases considerably, with the postnatal age of death of very preterm infants 6 weeks later than that of term infants.

5. National Center for Health Statistics has released final infant mortality rates for 2003. You may access the information by clicking on the link below. Look for Table 4 for 2003 SIDS rates. http://www.cdc.gov/nchs/products/pubs/pubd/hestats/finaldeaths03/finaldeaths03.htm

6. The only nationally syndicated radio program targeting African-American health issues--Journey To Wellness--has unveiled a new website — www.journeytowellness.com. This new online health magazine and community is designed to provide credible health information for African-Americans in a consumer-friendly format. “Our goal is to inform, inspire, and enable African-Americans to take better care of their health,” says Dr. Mary Harris, Executive Producer and Host of Journey To Wellness®. The program and Dr. Harris are located in Atlanta.

7. The CJ Foundation for SIDS will provide a variety of grant opportunities to prospective grantees in the coming year. Programs offering services relating to SIDS and/or SUID are eligible to apply for funding. In order to apply for a grant, you must follow the guidelines provided by the CJ Foundation for SIDS. The guidelines for the 2006 Program Services Grants are now available and can be requested by contacting: Wendy Jacobs Email: wendy@cjsids.com. The Georgia SIDS Project currently has a CJ Foundation grant to develop web-based bereavement support training.

8. Traffic Safety Study. The American Automobile Association Foundation for Traffic Safety recently analyzed data from the National Highway Traffic Safety Administration’s Fatality Analysis Reporting System, and identified all fatal crashes involving teen drivers of passenger vehicles. Read the report, “Teen Crashes -- Everyone is at Risk,” here: http://www.aaaexchange.com/Assets/Files/200611814220.TeenDriversRisk2.pdf.

9. Congenital Heart Defect Awareness Week is February 7-14, 2006 An international coalition of families, individuals, non-profit organizations, support groups, and health professionals participate in a campaign to increase public awareness of Congenital Heart Defects and Childhood Heart Disease. To learn more, go to http://tchin.org/aware/

10. Injury Prevention for Children and Adolescents: Research, Practice and Advocacy. APHA says that this book aims to put childhood and adolescent injuries on everyone's radar screen. Chapters touch on such topics as costs of injuries and the amount that may be saved through prevention activities, hazards associated with common nursery products, injuries at school, and abuse and neglect. Published by the American Public Health Association, 2005, ISBN: 0-87553-068-0, 377 pages, cost is $39 ($27.30 for APHA members), plus shipping and handling. To order, call toll free (888) 320-APHA; fax (888) 361-APHA; e-mail apha@pbd.com or visit APHA's Web site: www.apha.org/media

11. Racial and Gender Differences in the Viability of Extremely Low Birth Weight Infants: A Population-Based Study. Morse, SB. PEDIATRICS Vol. 117 No. 1 January 2006, The authors set out to provide a race- and gender-specific model for predicting 1-year survival rates for extremely low birth weight (ELBW) infants by using population-based data. They analyzed birth and death certificates for all children (N = 5076) with birth weights between 300 g and 1000 g who were born in Florida between 1996 and 2000. They found that one-year survival rates for 5076 ELBW infants born between 1996 and 2000 did not change during the 5-year period (60-62%). The survival rate at 500 g was 14% (n = 716). Survival rates at 501 to 600 g and 601 to 700 g were 36% and 62%, respectively. The survival rate reached >85% for infants of >800 g. Modeling indicated a survival advantage for female infants, compared with male infants and for black infants, compared with white infants. Black female infants had 2.1 greater odds of survival than did white male infants. The authors conclude that there are significant race and gender differences in 1-year survival rates for ELBW infants, as well as the interactions of these 2 factors. They say that these findings can assist obstetricians and neonatologists not only in the care of ELBW infants but also in discussions with families.

12. Developmental changes in infant heart rate responses to head-up tilting. Myers MM, et al Acta Paediatr. Jan. 2006 Newborn infants produce significant heart rate responses to both head-up and head-down tilting: heart rate increases with head-up tilting and decreases with head-down tilting. However, previously we found that, at 2-4 mo of age, heart rate increases were no longer significant following slow head-up tilting. This study was designed to determine if 2-4-mo-old infants have significant increases in heart rate when tilted rapidly. Fifty-four infants were tested as newborns or at 2-4 mo of age. Newborns exhibited increases in heart rate using both tilt speeds; however, at 2-4 mo of age, heart rate did not change significantly using either speed of tilting. There are significant early developmental changes in cardiac responses to hypotensive challenge. Newborns react like adults, mounting sustained increases in heart rate in response to head-up tilting, but at 2-4 mo of age sustained heart rate responses are no longer significant. Tilt tests may provide a standardized method for assessing autonomic competence during the period of maximum vulnerability to sudden infant death syndrome. A second study Topographic localization of electrocortical activation in newborn and two- to four-month-old infants in response to head-up tilting. Grieve PG, et al Acta Paediatr. 2005 Dec;94(12):1756-63.
Aims: Confirmed that head-up tilting causes sustained increases in the heart rate (HR) of newborn infants but not during the period of maximum vulnerability to SIDS at 2-4 mo of age, and (2) to determine whether electrocortical activation (changes in high-frequency EEG power) also shows topographic and age-dependent effects of tilting. The patterns of HR change and electrocortical activation with tilting of newborn infants are different from infants at the age of highest risk for SIDS.

13. Pediatric do-not-attempt-resuscitation orders and public schools: a national assessment of policies and laws (by Kimberly MB, et al Am J Bioeth 2005 winter) discusses issues related to special medically needy children and the ability of public schools to respond to DNR family wishes and existing state laws and school policy. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16036666&query_hl=11&itool=pubmed_docsum

www.sidsga.org
2300 Henderson Mill Rd., Suite 410

Atlanta, Georgia 30345
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-mail: gasids@mindspring.com