The Legacy of Sudden Infant Death Syndrome (SIDS)

In 1981, my father went home for lunch. He walked into my baby sister’s room to kiss her goodbye and instead found that his little girl not breathing and without a pulse. She could not be revived. It was a parent’s worst nightmare come true. My sister’s death from Sudden Infant Death Syndrome (SIDS) has left a lasting scar on my family. We still feel its effects over thirty years later.

The Legacy of Sudden Infant Death Syndrome (SIDS)
Baby sleeping

My sisters and I are more anxious than the average parents with newborns. All of us are guilty of sneaking into our babies’ rooms while they were sleeping and anxiously looking for the rise and fall of their chest. Always watchful and with crossed finger hoping, no praying that the fate of our sister will not be revisited on our children.

The cause of Sudden Infant Death Syndrome (SIDS) remains, for the most part, unknown. Prematurity is a risk factor, so too seems to be exposure to cigarette smoke. Placing a baby on their back to sleep seems to help prevent SIDS, as does removing blankets, pillows, and bumper pads from cribs. Some research has also shown that up to 10 percent of SIDS deaths may be related to congenital heart rhythm disorders.

I find little of this reassuring. Sudden Infant Death Syndrome (SIDS) feels to me like a random lightening strike. You don’t know where or when it is going to strike and, as a parent you are powerless to prevent it. And, I do believe it can happen to my child because my sister’s death proved to me that my family is not immune to such a tragedy.

Pregnant with my second child, I find myself growing more anxious as her birth approaches. I will count down the months until she passes out of the danger zone for SIDS, as I did with my son. I will pray and hope that she makes it through and sleep more soundly when she does.

It is a legacy of fear. But, it is a legacy of fear that I hope to not pass down to my own children. The farther our family moves away from the tragedy, the less hold it has over us. My children will, most likely, never share my experience of losing a sibling to Sudden Infant Death Syndrome (SIDS).

The Legacy of Sudden Infant Death Syndrome (SIDS)
Baby’s feet

They will be able to believe that it would never happen to them or their children and that, in my opinion, is for the best. After all, I will worry enough about my grandchildren enough for all of us because I will never forget.

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Comments

  1. I’m so sorry for your family’s loss. While we move on past certain things, we certainly never forget them. I hope your family never knows that pain again.

  2. I’m so sorry for your family’s loss. My parents too lost a 2-week old baby, before I was born, and to this day they still can’t speak easily about it. It wasn’t SIDS in my family’s case but they never really knew what exactly went wrong with the baby (different country, different medical system, who knows??) but I do remember being absolutely panicked when I had my first child worrying that something similar would happen to us too. At 2 weeks old, I rushed my baby to CHEO thinking she was sick. Turns out there was nothing wrong with her except that she had some bad gas and a very nervous mommy! Good luck with your 2nd pregnancy:)

  3. Thank you for sharing your story. My daughter was born 3 months premature and I was absolutely terrified of SIDS knowing her risk was a lot higher than other babies. We got a movement monitor for her which allowed me some reassurance when she took longer than usual naps.

  4. Desirea,

    We are sorry to hear of your sister’s death, and acknowledge that SIDS can have long-term psychological impacts on families.

    While risk facotrs are only that – risk factors – we are pleased to circulate two resources that we hope may provide some reassurances to mothers:

    1) A new video from the Public Health Agency of Canada, “Safe Sleep for your Baby” http://www.phac-aspc.gc.ca/hp-ps/dca-dea/stages-etapes/childhood-enfance_0-2/sids/ss-eng.php and;

    2) Some research-referenced safe sleep guidelines in Canada’s Joint Statement on Safe Sleep we jointly released with several other partners in 2011. http://www.phac-aspc.gc.ca/hp-ps/dca-dea/stages-etapes/childhood-enfance_0-2/sids/jsss-ecss-eng.php

    Sadly though, it is quite true that babies are lost to SIDS while following all of these guidelines, and this is why we continue to pursue efforts to encourage more research in this field.

  5. I had two brothers who each died at three days old. At the time, the deaths were attributed to sids. However, it has been realized since that they died from a urea cycle disorder. It is thought that at least 10% if what used to be categorized as sids deaths are actually genetic urea cycle disorders. I have since had two sons of my own who have died from this. For more info, look at the national urea cycle disorders foundation.website. http://www.nucdf.org

  6. Thank you for your comments. Since writing this, I have found out that there is a genetic heart condition in my family known as Long QT Syndrome (LQTS). It is estimated that up to 10% of deaths attributed to SIDS may be caused by this syndrome. We will never know, however, if this was the case for my sister. However, it is a reminder that the cause of SIDS is still being researched and, hopefully, someday we will be able to prevent the loss of any more children.

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