Why Finding the Reason Behind SIDS Means So Much to Me

Finding the cause of SIDS has the potential to relinquish blame and the promise to act as a stepping stone toward long-awaited closure for grieving families.

Photo collage of subject with their child who suffered from sudden infant death syndrome (SIDS)
Photo: Courtesy of Subject

Trigger warning: infant loss.

I'm unsure what I expected to see in the news last week while scrolling through my phone and sipping my morning coffee. However, I can attest that it certainly wasn't a groundbreaking study that could pinpoint the cause of Sudden Infant Death Syndrome (SIDS). But there it was, garnering substantial attention across various news channels: "World first breakthrough could prevent SIDS." Finally, something worth celebrating.

Like most parents, I felt like I could breathe a sigh of relief. But it was more than that for me, too. You see, I'm not like most parents. I became a little different when my daughter died five years ago. And this study profoundly touched me because she is one of 3,400 infants who die from SIDS annually in America alone.

Close up of baby laughing
Caila Smith

Words are an injustice to that sort of pain. Even the most thoughtful terminology doesn't come close to scratching the surface of what it is to lose a child. Her loss shattered the core foundation of life as I knew it, placing a time stamp on the "old me" and recreating the "new me." And what kills me is that it happened without fair warning because that is SIDS in a nutshell.

It baffles me how comfortable people felt saying to me, "Sometimes babies just die." As if that's something we ought to learn how to accept. I suppose it's easier on the other side—the side where you never had to make funeral arrangements for your previously thriving four-month-old child.

But what hurts the most is when even the doctors tell you that they can't explain your child's death. When you're without answers, it's then that your instinct kicks in, and you begin to seek your own. And after 29 years following her son's untimely death, that's what Dr. Carmel Harrington did with this study.

Researchers have long theorized that there could be a link between SIDS and a deficit in a part of the brain that controls sleep and arousal. Harrington, the lead author of the study, proved this theory by comparing dried blood samples of healthy newborns and newborns who had tragically succumbed to SIDS. In her findings, butyrylcholinesterase (BChE) levels, an enzyme that controls blood pressure and breathing, were significantly lower in infants who had died from SIDS than in healthy newborns.

"Babies have a very powerful mechanism to let us know when they are not happy. Usually, if a baby is confronted with a life-threatening situation, such as difficulty breathing during sleep because they are on their tummies, they will arouse and cry out. What this research shows is that some babies don't have this same robust arousal response," Harrington told Sydney Children's Hospitals Network.

Until this point, I had resigned myself from saying that my daughter died from SIDS. The term felt like a blanket statement for what was a vast unknown. I told myself that it would be better to say that we didn't know why she died. Because, in all honesty, we genuinely didn't know. Nobody did.

Happy baby in monkey PJs
Caila Smith

It's human nature to look for explanations. But when you discover that there aren't any, it leaves you with even more questions. Perhaps the most impactful statement from Harrington in response to the study was this: "These families can now live with the knowledge that this was not their fault."

And I can't help but feel like she could be saying this to herself as much as she is to every other bereaved parent with a loss like hers. Because when your child dies for no known reason, you become a professional at playing the blame game. You blame yourself. As spouses, you point fingers at one another. You question the competency of pediatricians, the ones you've always respected. When you know nothing, you wonder about everything.

This Australian study is the only glimmer of hope offered for parents like me. It's the first step towards being able to chip away the layers upon layers of guilt. It has the potential to relinquish blame and the promise to act as a stepping stone toward long-awaited closure for grieving families.

But above all, it brings hope that someday, SIDS could be a thing of the past. Thousands of babies could go on to live the lives they are supposed to, and families could be spared from the destruction SIDS leaves in its wake.

Of course, some experts have noted that this study is in its preliminary stages and will need more research. But Harrington is hopeful that the medical community may be able to screen infants for the BChe deficiency. From there, we could see prevention methods incorporated in the future.

Even with this data, remaining vigilant in advocating for safe sleep is essential. Some doctors worry that this new information could provide parents with a false sense of ease. But we must digest this report in a way that helps us to understand the significance of safe sleep further.

Nearly all parents understand why unsafe sleep is discouraged, but far too few comprehend how poor sleeping conditions can cause infant deaths. The reduced enzyme accountable for decreased arousal in infants suggests that those affected wouldn't have the ability to stir when in a life-threatening scenario. Therefore, if we can prevent exposure to these situations, we can limit the possibility of sudden infant death.

This information doesn't say that healthy infants in safe sleeping environments can't die from SIDS because they can and do. But efforts towards promoting safe sleep like the Back To Sleep Campaign, which decreased sudden infant death by a whopping 70 percent, speak volumes about the effectiveness of safe sleep.

This study is bittersweet for parents like me. Years of shame, guilt, and anger surrounding my child's death won't dissipate in one day. The study won't bring my daughter back, but it has the potential to save another. And I think I speak for every bereaved parent in my shoes when I say that is enough.

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