Disclaimer: The following post is written from the perspective of a Duluth Mom contributor who has experienced the loss of a child due to SIDS. Her words are written in response to the recently published article regarding SIDS research findings. The following words are her opinion and her opinion alone, and may or may not be shared by other families who have experienced loss due to SIDS.
When this article surfaced on my page last night I took some time to read it. These headlines and the way they are written always make me cringe. Because typically they are far-fetched and full of misinformation that is aimed to “educate” the general public. And because over the past 11 years, since Ray died, there has been a barrage of articles that state, “We figured out SIDS!” Yet as fast as those articles come, they fade away and we are back to having no freaking clue as to why our children die.
I do want to acknowledge the people that have shared this article with me. Thank you. My opinions on it do not reflect on how much it means to me that you thought of me. And my family. And my Ray. The awareness Ray’s life and death have brought to the general public, and the way he defined my life, is something I value immensely. It’s just one way that brings meaning to his life. And continued meaning to mine. Thank you. From the bottom of my heart. I appreciate you.
The most important thing when it comes to parenting and the fear of SIDS is considering what brings you comfort? Is it an article stating that it may have found a cause? Good- go with that. Is it the statistic that the chances of SIDS affecting you are less than one percent? Awesome – hold on to that. Because, as a parent, anything that brings you comfort in raising these amazing and tiny humans is where you should invest your time.
Look at this happy baby. And his little plot of land he resides in now. This is what the real face of infant loss looks like.
Relating to this article specifically, I have so many questions. What was the sample size? Is the enzyme elevated in everyone that dies? Or just babies who have SIDS as a cause of death? Did we test babies that died from causes other than SIDS? How many “healthy” and alive infants were tested? Did we test any that weren’t healthy or had other issues that cause abnormal enzyme levels? What about alive adults? What age ranges?
I have heard other speculations. Examples include:
”It’s vaccines!” (Nope… not in my house. And don’t get me started on the correlation between vaccines and autism. Again, not in my house.)
“It’s cardiac-related!”
“It’s metabolic!”
“It’s respiratory-related!”
“Something drives them to fall asleep so hard they stop breathing!”
So. Many. Theories. No actual change. Babies are still dying from SIDS every day.
I think the most important question for me is what do we do with these lab results? Do we test all babies with a newborn screening just as we do for so many other inborn/genetic issues? What is the treatment if we find elevated levels in a living child? Do the families take that baby home and wonder every morning if that is the day they will wake up and find their child has died? Can you imagine the increase in mental health issues in parents? Grandparents? Siblings? Aunts and Uncles? Cousins? Siblings? The ramifications could be endless.
What kind of support services would be in place for these families facing the mortality of their child? I can tell you with 100% certainty that I would not have wanted to know if Ray was going to die. The life we had with him, the 4 months and 10 days, were not enough and all my life rolled into one. I would change nothing.
Supporting SIDS research is wonderful. Lord knows we have donated our fair share to help move forward research. However, over the years I have learned that we don’t know what we are really researching. How do you know when the first sign of SIDS is death?
My personal efforts changed at one point from supporting research to supporting families that have experienced any aspect of child loss.
SIDS, cancer, trauma, metabolic illness, stillbirth, miscarriage – all of the losses. We can’t bring our children back, should we research? Sure – what does it hurt? But should we have adequate support for loss parents in a country that can’t support the mental health/PTSD/marriage issues that come with infant death? 110%.
Again, if this new research article gives you peace, believe it. In the meantime, I’ll be over here waiting for the resources to become more readily available in supporting loss families. Because my gut says we will not stop SIDS in my lifetime.
I just want to say how moved I was reading your story. I am so sorry for your loss of your little one, and admire your courage and bravery in talking openly about your experience. Blessings and peace to you, strong mama.
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