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What SIDS is Not

I had the distinct opportunity to attend the Collaborative Improvement and Innovation (COIN) meeting for the Safe Sleep initiative in Alabama and met some motivated leaders in the field who are passionate about making a difference in the arena of protecting infant life. This initiative collaborates with the Safe to Sleep campaign through the National Institute of Health. The five areas of focus for COIN are 1) Safe Sleep 2) Perinatal Regionalization 3) Smoking Cessation 4) Interconception Care and 5) Elective Deliveries before 39 weeks. All five focus areas have a single goal: lowering the infant mortality rate- saving babies' lives.

During the meeting, a common theme resounded. The second leading cause of death in children under the age of 18 years old is sleep related deaths. The first leading cause is attributed to vehicle accidents. Astonished? I am, too! What that means is in the state of Alabama the second leading killer of children is PREVENTABLE! In order to break this down, I feel it is first essential to explain and over explain what SIDS is not so that people realize they can prevent infant death....they can save babies' lives.

Sudden Infant Death Syndrome (SIDS) is the unexplained death of an infant under one year old diagnosed after autopsy, death scene investigation and child/family medical history review. If the cause of death remains unclear or unknown it is labeled SIDS. As medical technology advances, we are able to detect more metabolic, endocrinological, cardiovascular and other disease processes earlier and begin treatment right away. This translates to saving babies' lives. The medical research community is uncovering new health issues regularly reducing the number of unknowns. Think of SIDS as an unknown disease process not yet discovered. As the number of unknowns reduce, more accurate diagnoses can be made and more medical mysteries explained. This is the true driver of reducing the SIDS rate.

I bring this up because many people confuse other things with SIDS. For instance, suffocation and SIDS are not the same thing. Suffocation is a "known" cause. Birth defects discovered in an infant's heart or brain are not SIDS because the defect is "known". Low birth weight or prematurity is not SIDS because it is "known". See where I'm going here? SIDS = unknown cause. We can't have a medical code that says "We have no idea" so they had to give it a name, SIDS. One day, all of the medical mysteries may be solved and on that day, everything will have a label. Researchers may one day find a common disease process they decide to label Sudden Infant Death Syndrome, but then its definition would have to change. Follow me?

What is preventable? Sleep related deaths. A sleep related death is when a baby suffocates laying in an adult bed. A sleep related death is when a baby is trapped under another child and smothered during sleep. A sleep related death is when a baby is left to sleep in a car seat, his or her head falls forward and cuts off the airway causing the baby to stop breathing. A sleep related death is when a baby slips between the crib and the mattress because it is not properly fitted and becomes trapped. A sleep related death is when a baby is smothered by pillows, blankets and stuffed animals in the crib. It is gruesome, it is gory, but it is absolutely necessary for all of you to understand you can prevent sleep related deaths. And it is also essential to understand that we are not fighting SIDS in this instance, we are fighting accidental deaths with known causes.

It is a grave injustice for parents to be given a SIDS diagnosis for the death of their infant when, in fact, it was a sleep related death. This only puts future children at risk for an accident of the same kind. Being told "there was nothing you could have done, it was SIDS" when it was actually an accidental suffocation, entrapment or parent overlay will do nothing to help those parents. We have a responsibility as a medical community to be honest and upfront so parents can not only protect their own children, but also become advocates for other parents in safe sleep practices for infants.

Safe sleep means:

1) An infant should have their own sleeping environment with a firm sleep surface (crib, play yard, bassinet) where they sleep alone. Next to your bed, not in your bed.

2) Nothing soft or plush should be put in the baby's sleeping area like heavy, thick blankets, pillows or stuffed animals.

3) A baby should not sleep in an adult bed, on the couch or in a recliner due to the risk of suffocation. Next to your bed, not in your bed.

4) A baby should not sleep in a car seat, swing or bouncer due to the risk of closing off the airway.

We are not helpless against this! We must, MUST understand the distinction between SIDS and a sleep related death if we are ever going to move forward in lowering the infant mortality rate. What you know can save your baby's life. Be safe out there!

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