Guiding a baby safely from pregnancy to its first birthday: That’s First Candle’s mission. In the 1960s when First Candle was founded, it served as a local organization led by parents who had lost their babies. Over the years, as research increased and First Candle launched the Back to Sleep campaign, the organization’s primary focus became attempted prevention of Sudden Infant Death Syndrome (SIDS), a condition which usually affects infants between the age of 1 month and 1 year.
“Although it’s still the number one cause of death for babies under the age of 1, the rates have dropped a lot, and a lot of that is because of the public awareness campaigns we have been doing,” says First Candle CEO Christopher Blake.
After the Back to Sleep campaign in the 1990s, which instructed parents on how to put their child to bed in a manner that would lower the risk of SIDS, there was a decrease in SIDS rates (although some of that could be attributed to certain other causes, such as suffocation, being determined as the cause of death rather than SIDS). First Candle advocates for having a child sleep on their back on a firm mattress with a tight-fitting sheet without any items in the crib, without any other babies or people in the crib, and without a blanket unless the baby is swaddled.
In the past, SIDS was a “disease of exclusion,” the diagnosis when all other possibilities that could lead to the infant’s death were ruled out.
“There’s a lot of research being done because there are still a lot of babies that die without explanation; there’s a lot of research being done on brain stem abnormalities, genetics, things like that, so they’re defining SIDS even more,” Blake says. “At some point in the near future, it won’t be a disease of exclusion anymore—they’ll know how to test for it.”
First Candle focuses on educating and empowering parents as well as supporting grieving families. Blake says several aspects of childbirth, such as prenatal visits, are integral in lowering a baby’s risk of SIDS, but many mothers are unaware of their importance. “There’s really important correlations between getting a baby safely and healthily to their first birthday, and what happens when the mom is pregnant,” Blake explains.
First Candle’s “Pregnant and Empowered” program tackles misinformation or lack of information to ensure that parents are both knowledgeable about steps to lower SIDS risk and feel empowered to impart that knowledge on caregivers and relatives.
Part of the problem is that a parent’s instinct, based on ideals sometimes gleaned from sources like movies or the internet, may contradict what is actually best for a child. Co-sleeping, for example, could lead to suffocation, although co-sleeping may seem perfectly natural. A cute crib stacked with stuffed animals might look like a magazine page, but it isn’t safe. “There are a lot of things online that appeal to our idea of what feels right or looks right, but as an organization we want to focus on getting that message out of what research says,” Blake explains.
At this time, SIDS is not preventable. However, informed parents can take several steps to lower their child’s risk. “Getting the word out about things like [not letting a child sleep on] couch cushions and not having a bunch of cute junk in the crib or not co-sleeping, that’s sort of the low-hanging fruit,” Blake notes. “The research takes years and years and years.”
So far, research has been progressive but not altogether conclusive. Different scientists are inspecting different theories—unbalanced serotonin levels, inner ear problems, and more— as to why SIDS occurs. While the brainstem research in regard to serotonin levels has been the most widely accepted, there is not yet a definitive cure or even reason for SIDS. As research progresses, First Candle will continue to support research, aid families, and spread information to try and lower each baby’s risk of SIDS.
“One of the things that is a challenge for a charity like First Candle is to always come up with something new that is going to catch peoples’ eyes, because there is new research being done all the time, there is new information out there, and getting that out is important,” Blake says.
To learn more about First Candle and about lowering your baby’s risk of SIDS, visit firstcandle.org!
