In October 1988, President Ronald Reagan declared October as National Pregnancy and Infant Loss Awareness Month saying, "When a child loses his parent, they are called an orphan. When a spouse loses her or his partner, they are called a widow or widower. When parents lose their child, there isn’t a word to describe them." The campaign for the October 15 Infant Loss Remembrance Day began in 2002, and the “wave of light” has been adopted worldwide. If we each light a candle in memory of the infants we’ve lost at 7pm local time, then together we create a continuous wave light reaching all the way around the globe. What a cool, yet simple way, to support each other, and embrace and acknowledge that these little lives mattered and we are changed because of them.
Because today is designated as an awareness day, let me share some numbers with you:
• 90,000 children die annually in the United States before their first birthday
• Nearly 2,500 babies die per year in the United States due to SIDS
• Nearly 30,000 babies per year are stillborn in the US. Worldwide that number is 4.5 million per year.
• 15-20% of all clinically recognized pregnancies end in miscarriage.
• There are an additional 700,000 babies per year whose lives are ended by choice in the US
And because SIDS is my special reach-out point:
SIDS is the leading cause of death for babies between 1 month and 1 year of age. Most deaths occur in babies 1 to 4 months of age and 90% of them occur before a child is 6 months old. SIDS in unpredictable and unpreventable. It occurs in both genders (in boys slightly more than girls) and across all races and socioeconomic classes. It is not due to vaccinations, suffocation, or choking. SIDS is a diagnosis of exclusion, meaning that when every other potential cause has been ruled out, then a diagnosis of SIDS can be assigned. As pointed out by the CJ Foundation: Increasingly, as the years have gone by, fewer and fewer medical examiners and coroners have been using SIDS as a cause of death. If an infant dies unexpectedly, the death may be listed as KSIDS, SUID, SUDI, SID, Cot Death, plus many more. To make it personal, Lach’s death certificate said SIDS on it, but when I had an opportunity to talk to a medical examiner who did not do Lach’s autopsy, he told me that he would not have used SIDS as the diagnosis because Lach was significantly older than the “typical” SIDS baby, though he was still under a year old.
While SIDS cannot be predicted and can still occur even if you’re following all the recommendations, there are some important things you can do to reduce the risk. Some of these things can be difficult to follow with a newborn that won’t sleep and exhausted parents. Educate yourself. Know the risks. When parents are choosing how to put their child to sleep, I ask them to consider the scenario that their child doesn’t wake up. Would you be comfortable saying to yourself that you did everything possible to minimize that risk, or if your child died during this sleep time, would you regret the sleep environment that you chose for them? Here are some ways to help reduce the risk, as outlined by the American Academy of Pediatrics…with some of my added notes in caps:
• Breastfeeding is recommended and is associated with a reduced risk of SIDS. THE RISK IS REDUCED BY AS MUCH AS 60%
• Infants should be immunized. Evidence suggests that immunization reduces the risk of SIDS by 50 percent.
• Bumper pads should not be used in cribs. There is no evidence that bumper pads prevent injuries, and there is a potential risk of suffocation, strangulation or entrapment. DO NOT RISK THE LIFE OF YOUR CHILD FOR A CUTE BUMPER…USE IT AS WALL DÉCOR, A WINDOW VALENCE, OR PUT IT IN THE CRIB TO TAKE A PICTURE AND THEN TAKE IT RIGHT BACK OUT.
• Always place your baby on his or her back for every sleep time. WHEN BABIES CAN FLIP THEMSELVES OVER, BUT DON’T ROLL CONSISTENTLY, GO AHEAD AND PUT THEM BACK ONTO THEIR BACKS IF YOU FIND THEM ON THEIR TUMMIES. ONCE THEY ARE ROLLING WELL, THEY CAN BE ALLOWED TO ADOPT WHICHEVER SLEEP POSITION THEY PREFER
• Always use a firm sleep surface. Car seats and other sitting devices are not recommended for routine sleep. THIS INCLUDES SWINGS, BOUNCERS, ETC.
• The baby should sleep in the same room as the parents, but not in the same bed (room-sharing without bed-sharing). I KNOW HOW AWESOME IT IS TO SNUGGLE A SLEEPING BABY WHILE YOU LAY IN BED AND HOW CONVENIENT IT IS TO NURSE A BABY WHILE ARE IN BED. MAKE SURE YOU HAVE THE OPPORTUNITY TO DO IT AGAIN THE NEXT DAY AND PUT THE BABY IN THEIR OWN SPACE BEFORE YOU ALLOW YOURSELF TO DOZE OFF.
• Keep soft objects or loose bedding out of the crib. This includes pillows, blankets, and bumper pads. I KNOW WE LOVE TO SEE OUR BABIES ALL SNUGGLED UP WITH A BLANKET AND A STUFFED ANIMAL. TAKE A PICTURE AND THEN TAKE THOSE THINGS AWAY. IT IS NOT WORTH HAVING TO PUT YOUR BABY IN A CASKET THE NEXT TIME YOU TUCK THEM IN.
• Wedges and positioners should not be used.
• Pregnant woman should receive regular prenatal care.
• Don’t smoke during pregnancy or after birth.
• Offer a pacifier at nap time and bedtime.
• Avoid covering the infant’s head or overheating. WHEN MOTHERS WHO HAVE LOST BABIES COME ACROSS OTHER BABIES SLEEPING IN A CAR SEAT WITH THEIR FACES COVERED, WE PANIC FOR YOU. IF YOU COVER YOUR BABY’S FACE FOR MORE THAN JUST A FEW MINUTES TO PROTECT THEM FROM THE FRIGID WEATHER, DON’T BE ALARMED IF A STRANGE WOMAN COMES UP TO YOU AND FRANTICALLY UNCOVERS YOUR CHILD. THANK HER. I HAVEN’T ACTUALLY DONE THIS TO A STRANGER, BUT I WANT TO.
• Do not use home monitors or commercial devices marketed to reduce the risk of SIDS. I PERSONALLY HAVE USED THESE DEVICES. THEY CANNOT PREVENT A DEATH, THEY CAN ONLY ALERT YOU TO A POTENTIAL PROBLEM, BUT THEY GAVE ME SOME PEACE OF MIND AND REDUCED MY ANXIETY WHILE MY BABIES SLEPT. THE WARNING FROM THE APA COMES MORE SO AS NOT TO RELY ON THESE DEVICES TO PREVENT DEATH.
• Supervised, awake tummy time is recommended daily to facilitate development and minimize the occurrence of positional plagiocephaly (flat heads).
Even as a mother who knows the loss, I was not able to practice these safe sleep recommendations perfectly. However, I always kept an attitude of working toward that. There were times that I was absolutely exhausted and the baby only cried if they were not snuggled up next to me. There were times that I needed to make a brief exception, and then work toward a better sleep environment the next time. Keep after it, babies will adjust to the sleeping environments that you give them. If, God forbid, your child dies during sleep, give yourself the gift of not having to wonder if you could have prevented it by following these recommendations.
I find that I am offended when people that I love regularly and casually choose unsafe sleep environments and positions for their babies, simply because it's easier, their baby sleeps more soundly on their tummy, it's cute, or they just like it. Many bereaved mothers feel this way, and struggle with how to handle it. We often don't say anything, so as not to force the reality of death on another mother. I make a conscious effort to not be judgmental, every parent has unique circumstances that influence their decisions. I usually won't say anything because I am too emotionally charged, or worried that I'll seem crazy or paranoid, but I can't help but feel angry. It feels like a disregard for the significance of my loss, and though it's not my child, that unsafe sleep environment is putting me at risk for losing another child that I love, too. It is more than just the parents who grieve the loss of a child.
One of the biggest ways that you can honor a mother who has lost a child is to choose a safe sleep environment in memory of the child who died. Put your child in a safe sleep environment, take a picture and send it to that bereaved mom you love. Include a note that is something like "In honor of (baby's name), we are choosing a safe sleep environment. (Baby's name) life has made a difference to us." It will be like a little living memorial! What a simple, beautiful and powerful gift.