Q&A with First Candle CEO Alison Jacobson

Sudden infant death syndrome, or SIDS, is the leading cause of death to infants from 1 to 12 months, according to the Centers for Disease Control and Prevention (CDC). It’s determined when the death of an infant under the age of 1 dies unexpectedly, with no known cause after appropriate examinations. In honor of SIDS Awareness Month, we’re shining the spotlight on First Candle, an organization that strives to help all babies reach their first birthdays by decreasing the number of deaths due to SIDS, stillbirth and other SUID (sudden unexpected infant deaths).

Alison Jacobson, newly stated CEO of First Candle, lost her first son to SIDS in 1997. At the time she was an uninformed, grieving parent who was looking for answers and a way to advocate. Today, she’s found her misson and is sharing it with P&N.

P&N: You lost your son, Connor, to SIDS in 1997. What drew you to seek the support of First Candle (then, SIDS Alliance)? In what ways was the organization able to help you?

Alison Jacobson: Unfortunately, while I had naturally heard about SIDS, I never expected it would happen to me. Neither my OB/GYN nor pediatrician talked to me about risk reduction measures. When Connor died, I started researching more about SIDS and learned about the SIDS Alliance. I called them, and they were truly my lifeline. I was able to speak to another mom who had lost her baby to SIDS and attend a conference where I met other parents. There were many grief support groups out there, but I needed to find one where it was just about SIDS—people who completely understood what I was going through. At that time, Facebook didn’t yet exist, but First Candle now has online support groups for SIDS, stillbirth and miscarriage. They offer comfort and support in so many ways.

P&N: How did you transition from grieving mom, seeking the guidance of First Candle, to becoming a member of the Board of Directors and now CEO?

AJ: Many parents, after losing a child to SIDS or stillbirth, want to do something. They want to educate other parents, fundraise, start a memorial fund in honor of their baby or get involved in some way. Prior to Connor’s death, I was a senior executive at a major public relations firm. My gift and talent was communication and public awareness. I felt compelled to get involved and help educate more parents and caregivers on SIDS risk reduction measures. The Chairman of the Board reached out to me and asked me join the Board, and I immediately accepted. I testified before Congress to increase funding for SIDS research, and I helped reposition the organization to expand to include stillbirth.

At the same time I was busy expanding my family! I went on to have another son and two daughters. Very early on I learned that my son had intellectual disabilities and so my attention needed to refocus to his care, but I never lost touch with my SIDS community.

My career expanded as well, becoming a national TV spokesperson and blogger known as the Safety Mom, which continues today. Two years ago, First Candle approached me about taking on a more significant role within the organization, helping to develop new strategic initiatives and act as co-host of their annual Gala. Then, at the beginning of this year, I was asked to take on the role of CEO. For me, this is about my life coming full circle and all of the paths leading to where I am right now. I’m honored and excited by the opportunity to expand First Candle and not only help eliminate SIDS and preventable stillbirths but support those families who have suffered a loss.

P&N: As First Candle’s CEO, do you have a personal mission in addition to the organization’s overall mission?

AJ: Every year 3,500 babies die in the United States due to SIDS or other sleep-related deaths, and there are another 24,000 stillbirths. These numbers are astounding and heartbreaking. I’m shocked when I speak to pregnant and new parents who tell me that they were never given information about the importance of counting kicks during pregnancy, creating a safe sleep environment for their baby and other ways in which to reduce the risk of SIDS. My goal is to make sure that every new parent receives these messages.

P&N: What advice or information about SIDS would you most like to impart on new moms, dads or caregivers?

AJ: Follow the guidelines for creating a safe sleep environment established by the American Academy of Pediatrics. This includes:

• Always place your baby on his or her back for every sleep time.
• Always use a firm sleep surface. Car seats and other sitting devices are not recommended for routine sleep.
• The baby should sleep in the same room as the parents, but not in the same bed (room-sharing without bed-sharing).
• Keep soft objects or loose bedding out of the crib. This includes pillows, blankets, and bumper pads.
• Wedges and positioners should not be used.
• Don’t smoke during pregnancy or after birth.
• Breastfeeding is recommended.
• Offer a pacifier at nap time and bedtime.
• Avoid covering the infant’s head or overheating.
• Infants should receive all recommended vaccinations.
• Supervised, awake tummy time is recommended daily to facilitate development and minimize the occurrence of positional plagiocephaly (flat heads).

P&N: How can families facing a tragedy similar to the one you faced find support?

AJ: We have peer support counselors available and families can call our grief support line to receive a free grief packet by calling 1-800-221-7437.

P&N: How do you think your tragedy has helped prepare you to become an advocate to parents all over the country?

AJ: Experiencing the loss of a child has changed me forever. While I would give anything to have my son back, I do feel that I was led to my true calling—helping families and being an advocate to keep our babies alive. There is nothing that I’m more passionate about.

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