• Maryland SIDS Information and Counseling Program • Infant and Child Loss Program • Education and Training Program • Consultation Services University of Maryland Baltimore Department of Pediatrics V O L U M E 12 / N O. 2 FALL/WINTER 2006 SIDS Research Findings Researchers at Children’s Hospital, Boston, announced findings that provide strong evidence that sudden infant death syndrome (SIDS) has a concrete biological basis. The researchers are confident that a diagnostic test can be developed to identify newborns at risk and envision treatments to protect them during the vulnerable period. Check presentation from the 2006 Golf Committee members. The current study, which will appear in the November 1 Journal of the American Medical Association http://jama.ama- Lightening Strikes Twice! assn.org/cgi/content/abstract/296/17/2124 contributes evidence that there is a Golf Invitational Rained Out problem in the development of the brain that occurs in utero and after birth as riday, Oct 6th 2006 was marked This year’s event raised a record breaking well. According to Dr. Hannah Kinney, with a big splash for the 16th $159,000 for the Center for Infant & principal investigator, the data gives a Annual Verizon Wireless-SIDS Child Loss . Despite the inclement weather, F window of time to identify infants at high Golf Invitational & Evening Reception . many sponsors and golfers traveled from risk and initiate interventions during the Steady rain forced the course superinten- all parts of the country to support this critical first six months of life. “My hope dent at Indian Spring Country Club, annual event - well known as one of the Silver Spring, MD, to cancel golf, but the best charity tournaments in the area. is that this research will in some way evening reception and auction were held Volunteers and golf committee members ease the pain for parents of SIDS victims, with great success! Rain has only were on hand throughout the day to helping them understand that their happened twice in 16 years… greet folks, entertain and set up the baby’s death was part of a disease process unfortunately two years in a row! evening portion of the event. We truly rather than a mystery,” says Kinney. are fortunate to have had so many “This finding (brainstem’s ability to use wonderful supporters committed to the and recycle serotonin, a brain chemical Inside: purpose of the golf outing and to that plays a role in regulating vital support the mission of the Center. Director’s Desk . 2 functions and mood regulation) lends Gutberlet Scholarship . 2 Monies raised from the Verizon Wireless- credence to the view that SIDS risk may Outreach and Training . 2 SIDS Golf Invitational provide more than greatly increase when an underlying Counselor’s Corner . 3 one third of the operating budget for the Safe Arrivals . 3 predisposition combines with an Center which provides grief counseling In Memory / Memorial Services . 3 environmental risk – such as sleeping Making a Difference . 4 services, community education, training, face down – at a developmentally Big Gala . 4 outreach and research. Next year’s event sensitive time in early life,” said Duane Bull & Oyster Roast . 5 will move to Turf Valley Resort & Alexander, M.D., Director of the NIH’s Burtonsville Walk . 5 Conference Center in Ellicott City, MD National Institute of Child Health and Golf Event . 6 on October 1, 2007. Thank you! Human Development. Director’s Desk Gutberlet Scholarship he Ronald Gutberlet, MD, scholarship made it possible Dear Friends: for parent, Debbie Hardy, to attend the MADD National It always seems something is going on at the Center. As Conference, Mission Possible: A Nation Without Drunk many of you know we had a very successful, but wet TDriving, September 7-10, 2006. Ms. Harvey is the parent of Verizon Wireless-SIDS Golf Invitational. That was followed by the Annual SIDS Bull and Oyster Roast, Janet Marie Hardy, killed at the age of 13 in a motor vehicle hosted by the Cockerham family. You will have an accident caused by a drunk driver. Ms Hardy has dedicated opportunity to read more about these events, but if you many hours to eliminating drunk drivers and being a peer did not join us for one or the other, come meet us at the support to other bereaved parents. The conference provided “Big Gala for Little Angles” on February 24th. See the event section for more details. Ms. Hardy with many ideas and much information to address the problem in Maryland. She had the opportunity to meet Like many working in programs that deal with infant and child sudden unexpected death, I subscribe to a listserv of other parents to gain and give support. The Center was like professionals. Sometimes the issues and debates are delighted to support Debbie in her efforts to make a difference of great interest, and others times not. However, recently in the lives of children. Please contact Donna Becker at: the Mayor of Milwaukee was widely touted for his support 410.706.5089 / [email protected] to learn more of the implementation of the Cribs for Kids Program based on the National model. The program provides safe about Ms. Hardy’s work or scholarship opportunities. cribs to low income families. Included in the effort is the Back to Sleep/Safe Environment messages, which many feel are as important as the actual crib. As in any media event, and often in delivering the Back to Sleep message, it seems to be implied that a ‘safe crib’ will prevent SIDS. Outreach and Training Efforts A bereaved grandmother, and National Program Director June 2006 – September 2006 of the Canadian Foundation for the Study of Infant Deaths, made an impassioned plea that we encourage the TRAINING reduction of all risks that may influence the lives of our children, but we must not infer that deaths attributed to Day Care providers . 96 SIDS, SUDI* and even SUDC** can be prevented. As she Professional staff . 6 states, because of changes/improvements in diagnoses 3rd trimester pregnant . 23 and an increase in parents’ risk reduction education it is impossible to compare stats from years prior to the Back Parents . 18 to Sleep Campaign. Many infants formerly determined to OUTREACH be SIDS might now be diagnosed due to medical advancements. However, not only is Canada continuing Risk reduction materials . 4,326 * to experience sudden infant deaths, like Maryland, the Light switch cover . 16,587 ** number of Sudden Unexplained Child Deaths seems to be * . includes Spanish materials increasing. The real issue is that we cannot use the term ** . includes light switch covers provided to all birth hospitals prevention when discussing SIDS, SUDI or SUDC deaths, and in fact other sudden infant and child deaths which are able to be diagnosed. It seems that the Director voiced many of the concerns parents and professionals wrestle with while trying to make sense of such a tragedy. And while doing so, she supported any effort, Contributions such as a crib project, that would reduce the risk of harm Charitable Giving at Work & Employer Matching Donations to our children. Thanks to all who have designated the Center as their charity At this time, Baltimore City has a crib program, and Carroll County is in the planning stages to implement of choice for the United Way, Maryland Charities Campaign, the Cribs for Kids Program. If you are interested in either Allstate Giving Campaign. If you would like to donate through of these programs or would like more information on the payroll deductions, select UMB Foundation, Inc. and ask your National Cribs for Kids Program please contact me at administrator for a supplemental form to designate 410.706.5089 or mail to: [email protected] . SIDS/Center for Infant & Child Loss. Peace . Donna This past year there has been an increase of employers match - * Sudden Unexplained Death in Infancy, ing employee donations. We would like to especially thank ** Sudden Unexplained Death in Childhood Tyco, Hewlett Packard, & GEICO. 2 Counselor’s Corner: Handling the Holidays hristmas and Chanukah, two you. Decide which traditions you difficult time for you and that talking holidays filled with tradition and want to keep this year and which you about your child is healing for you. C often associated with children, want to change. Be flexible. As you Memorialize your child. Light special are often especially difficult for progress in your journey through candles, have a special tree or special bereaved families. What you do, or grief, you may find that you are able ornaments for your child. Buy presents don’t do, may depend on whether or to go back to some of the traditions for a needy child or volunteer at a not you have young children who that you could not handle in the shelter or hospital around the busy should not be deprived of the joy the beginning. holiday season. Attend a memorial holidays can bring. Try to finish Do things at different times or in service. Although it may be difficult, it shopping well in advance so that you different places if that works for your will allow you to express your feelings in are not inundated by holiday displays, family. If you decide to take part in a caring and comfortable atmosphere. music and the rush of people that may family gatherings, feel free to mention Treasure any moments of happiness as a make you feel uncomfortable. You your child if you want to. If others special holiday gift. Honor your child by may even want to try shopping by are uncomfortable, that is their remembering them with love. catalog or the internet. Take advantage problem. Don’t let anyone make you of the people who said to let them Our thoughts and support are with each feel guilty for talking about your child family during this time of year.