by Stephanie Standige
Ronald Reagan designated the month of October as the national month of remembrance of infant loss, stillborn and miscarriage. October 15th is reserved as the National Day of Pregnancy and Infant Loss (PAIL). This acknowledgement aims to raise awareness of the prominence of infant death and pregnancy loss and to support those who have experienced the ultimate type of bereavement.
As I reflect on where I was a year ago at this time, I am reminded of all I had to look forward to: my plans for my unborn child’s future and how it would intertwine with my own; my hopes; making memories; experiencing milestones; and this sudden, overwhelming sense of purpose that overcame me as soon as I gave birth to my first and only child, Madeline. Madeline was delivered on December 9, 2015. I’ll be honest; I thought as soon as she was born, I wouldn’t be so emotional. However, as soon as I saw her, in actuality, I was in utter disbelief, a mild case of shock. “I made her,” I thought to myself as the head nurse handed Madeline to me.
For the first time, I held her 8 lbs., 7oz. body to my chest and sat in amazement at her beautiful head full of dark hair and how beautiful, healthy and perfect she was. Madeline was a part of me that grew with me, inside of me, for 9 months. I had been looking forward to that day for so long, and it was just as beautiful as I imagined. There is such thing as true love. It’s when a mother sees her child for the first time. It was so automatic, the wholeness I felt, and the unconditional love I had for my daughter, Madeline. She needed me and I needed her (but I knew that even before she was born).
October 8, 2016 marked 8 months since Madeline’s passing. It doesn’t make sense that a perfectly healthy baby would suddenly die in her sleep. I assumed Madeline’s death would be classified as a SIDS case. SIDS is what the Mayo Clinic defines “as the unexplained death, usually during sleep, of a seemingly healthy baby less than a year old. SIDS is sometimes known as “crib death” because the infant often dies in their crib. Although the cause is unknown, it appears that SIDS may be associated with “abnormalities in the portion of an infant’s brain that controls breathing and arousal from sleep”.
Let me repeat, just so were clear, “the cause is unknown”. When a complete autopsy report, further testing of tissues, blood work, a toxicology report, an investigation of the death scene and its circumstances, and a review of the medical history of the child and family do not offer a cause of death, this is an undetermined death. Why would we call it anything else? Research ways to prevent SIDS, and you will find the following advice: do not co-sleep, avoid soft bedding and toys in the baby crib, place the baby on their backs, etc. These pieces of advice are telling one how to avoid suffocating their baby, but suffocation does not cause SIDS. If this were the case, an autopsy would prove suffocation.
Until we have a known reason or cause of death, it is my belief that any unexplained infant death should be listed as “sudden infant death”, or SIDS. Until there is proof of anything more, let’s leave it at that.
Hannah Kinney, MD, a professor of pathology at Harvard Medical School and a neuropathologist at Children’s Hospital in Boston, suggests that a deficiency of serotonin in the brain stem (which controls vital functions during sleep, such as breathing, heart rate, and blood pressure) may help explain most of the deaths. “It is not going to explain all SIDS deaths.” However, she adds, “it will explain the majority.” Dr. Kinney said the findings suggest that in infants with the hippocampal abnormality, an unsafe sleep environment may trigger an underlying instability in heart or breathing function. Because many of the SIDS deaths also occurred in safe sleep environments, Dr. Kinney said that more research is needed to determine what might have triggered the underlying instability in these cases as well. Dr. Kinney noted that additional research is needed to find ways to detect the hippocampal abnormality in a live infant. Her study is published in the Journal of the American Medical Association.
This research states that a parent may follow every single rule of safe sleep, health, habit, and gets adequate healthcare, but infants still die unexpectedly. We have many ideas of what may cause these unexplained deaths, but there is no proof, and until there is proof, we cannot continue to assume causes. It’s no different than watching a commercial for a teeth whitening toothpaste claiming to “virtually remove stains”. The safe sleep campaign claims following certain preventative methods may prevent SIDS. The idea here is unexplained infant deaths still happen, even if every preventative method is taken.
However, according to the Centers For Disease Control, SIDS is rare, only occurring in less than 3,000 babies per year, and only 1,500 in 2013. The “Back To Sleep Campaign” was launched in 1994, and the CDC claims that SIDS cases fell dramatically. In reality, Coroners and Medical Examiners are only listing these unexplained deaths as causes other than SIDS. No matter what you call it, there is no proof of anything other than an unexplained cause of death. It appears that SIDS cases have not dropped. We are only making assumptions about these unexplained deaths. These assumptions are emotionally costly; the causes or reasons bear fault to the bereaved parents.
A parent loses their child to SIDS, and in an instant, guilt sets in. Could you imagine not only losing your child, but waking up to hold your lifeless infant, dealing with a crime scene investigation (it is protocol), and later going on to read the death report which provides no proof or reason for death, yet lists the cause of death as “sleeping in an adult bed with an adult”? To me, that screams “its all your fault”. That’s what Madeline’s cause of death is listed as. It’s hard enough to endure the death of a child. All those thoughts about your futures together, the “what haves”, the “could haves”, and everything one feels robbed of are painful enough.
The level of grief you experience when you lose a child is the most painful loss one could ever experience. These parents try to accept their loss as they mourn the future they have now lost without their child. We pass blame on the ones who need support, not blame. It is cruel to give an unproven statement over the proven answer: the death of their infant remains unexplained. Placing blame on parents is like throwing salt on a wound, except it doesn’t help heal anything, it just burns.
To all the bereaved parents out there, you are not alone. I understand. I understand how alone and empty it feels. This is not a connection we chose, but one that can bring us together.
For a much more in-depth study of SIDS, please check out: emedicine.medscape.com.
Stephanie Standige is a proud New Orleans native. Her credentials include a B.A. in Communication Studies (with a specialization in Broadcasting), double-minors in Psychology and Communication Management from the University of Alabama at Birmingham. She is still trying to figure out what she wants to be when she grows up; until then, she enjoys writing, sunshine, making lists, meeting new people, gardening, organizing, being creative, laughing, reading non-fiction, deep conversation, watching movies and a nice cocktail.