13 October 2023
This Sunday, Oct. 15, is a day to remember the gone but not forgotten babies. These babies were dreamt about and wished for. Their lives were cut short for diagnosed or undiagnosed reasons. My daughter, Reese, is one of them: a perfect 8 pound 3 ounce baby girl stillborn, whose death due to a cord accident could have been prevented had I been educated about warning signs.
We honor her short but impactful life on Pregnancy and Infant Loss Awareness Day by lighting a candle with my husband and her three siblings. We each share a message with her and say, “We love you, Reese,” before blowing out the candle. This day is dedicated to the families whose hearts are fuller than their arms, whose family photos are never complete and who are constantly fielding the complicated question, “How many children do you have?”
My response is always “four.” Reese’s big brother and two younger siblings are acutely aware that she is missing from our everyday life. Reese should be here helping me plan her 9th birthday. Instead, her siblings understand the finality of death in her absence.
In addition to honoring the babies gone too soon, Pregnancy and Infant Loss Awareness Day is also an opportunity to talk about awareness and prevention. Not every tragedy is preventable. But since Reese was stillborn in 2014, just hours before her scheduled delivery at 39 weeks and one day gestation, I have learned that 1 out of 175 babies are stillborn (a baby born without breath at 20 weeks gestation or more), totaling over 21,000 babies this year just in the United States.
Research from the National Institute of Health states that approximately 25% of stillbirths may be preventable. That means over 5,000 babies could be saved this year if there were more honest conversations about stillbirth prevention efforts, such as fetal movement monitoring in the third trimester.
This conversation never took place for me. I alerted my doctor when I noticed Reese’s movements slowing down but I didn’t have the data to back it up. I did have a gut instinct but that was dismissed. Rarely is medical intervention done based on a mother’s intuition; I found out too late that my intuition was correct. Reese needed help. I was told not to worry and that babies slow down. She died a few days later. At birth, Reese’s umbilical cord was wrapped tightly around her neck twice, cutting off her lifeline. Her reduced movements were the only indicator she was struggling.
Research shows that a change in a baby’s normal movement pattern can be the first and sometimes only indicator that a baby is in distress. Had I been educated on consistently tracking her movements the outcome could have been different. Sure, providers educate about the comparatively small risk factors associated with deli meat to prevent Listeria or staying clear of your cat’s litter box to protect against Toxoplasmosis. Why are pregnant people not educated on the importance of consistently tracking fetal movement in the third trimester?
Talking about stillbirth risks and prevention is no different than a public health campaign about the importance of wearing sunscreen. Talking about preventing this cancer doesn’t mean we are going to get melanoma. We wear sunscreen because we want to lower our chances of getting the deadly disease. The same should go for talking about stillbirth prevention to expectant people.
Expectant parents can’t try to prevent their child from dying in-utero if they aren’t being educated on warning signs. Our country has a culture of not wanting to stress out pregnant people, and it has led to lifesaving education being withheld from prenatal care. It needs to stop.
It wasn’t until my subsequent pregnancy that I discovered Count the Kicks, a nonprofit based in Iowa focused on lowering preventable stillbirths by educating on the importance of tracking fetal movement. I downloaded the free app and used it to track my son’s movements in the third trimester. The app logged data and showed me when/if his movements were out of his established norm. Using the Count the Kicks app empowered me and helped our family bond with my son well before he was born. It not only allowed us to advocate for him before birth, but also helped me manage my own anxiety during pregnancy after loss.
Why is our society so unwilling to make modest investments and improvements to educate expectant parents on prevention when the research shows it works? This Pregnancy and Infant Loss Awareness Day, let’s commit to normalizing conversations about pregnancy risks. It will save lives.
Amanda Duffy has been a stillbirth prevention advocate since experiencing the stillbirth of her daughter Reese in 2014. She lives in New Brighton with her husband and three living children.