My stillbirth blindsided me. Doctors and researchers can do better and Congress can help

This post was first published in the Denver Post.

My husband and I faced an unimaginable loss when our son, Lucas, was stillborn seven years ago.

On May 14, 2018, just a day after Mother’s Day, I was 39 weeks pregnant and began to feel contractions in the early evening. Although my pregnancy was classified as a high-risk one due to my age—over 35—everything had progressed normally and healthily up until that day. With joy and anticipation, my husband and I arrived at the hospital, looking forward to finally meeting our son. We had chosen the name Lucas, which means “light,” because his arrival would light up our world.

However, shortly after our arrival, I started to bleed. At first, I was reassured that minor bleeding was typical, but that “little” bleeding escalated into a gushing flow. I had to undergo an emergency C-section. It turned out that I was suffering from placenta abruption, a severe complication where the placenta separates from the inner wall of the uterus before delivery. This condition can cut off the baby’s supply of oxygen and nutrients and lead to significant maternal bleeding (Mayo Clinic). I came dangerously close to losing my own life, and heartbreakingly, Lucas was stillborn.

Words cannot begin to convey the shock and anguish of losing a child at the final moments after a long and seemingly normal pregnancy. The light that once illuminated my world was suddenly extinguished, plunging me into the dark world of depression.

The Centers for Disease Control and Prevention (CDC) defines stillbirth as the loss of a fetus after 20 weeks of pregnancy. Despite having multiple advanced degrees and considering myself well-informed, I erroneously thought stillbirths were a relic of the past, associated only with women lacking proper nutrition and access to adequate healthcare. I was naively confident-based on the fact that stillbirth risk was rarely brought up during my pregnancy- medical advancement had completely eradicated stillbirths, just as they have with diseases like malaria.

My personal loss was a harsh awakening, forcing me to confront the prevalence of stillbirths in modern America, in the 21st century. The statistics are staggering: approximately 21,000 babies are stillborn in the U.S. each year, and around two million worldwide. Even more shocking is that nearly a quarter of them in the U.S. and about half of them worldwide are preventable.

Behind these staggering statistics are real people, some of whom I met at my local support group for grieving parents who have experienced pregnancy loss and infant deaths. Like me, several mothers have suffered late-term stillbirths, occurring between 35 and 41 weeks of gestation. Many of them were never given explanations for the causes of their losses, only platitudes such as “It happens sometimes” or “There was nothing we could do.”

These mothers and I share another significant aspect of our experiences: we all became pregnant at an advanced maternal age (AMA), defined as 35 or older. Despite extensive research linking AMA to increased risks of stillbirth and placental abruption, vital discussions about these risks are rarely held. Instead, many healthcare providers avoid the topic mainly to prevent causing fear and anxiety to expectant mothers. Such good intention unfortunately led to the lack of awareness about stillbirth risks, which was why many of us moms were left shocked and in disbelief when informed that our babies were stillborn.

In addition to the reluctance of healthcare providers to raise public awareness about stillbirth, some still claim that decreased fetal movement in late-term pregnancy is normal due to the baby running out of room. This outdated belief has been thoroughly debunked; research clearly shows that while fetal movements may vary, they do not diminish as the pregnancy progresses. Expecting mothers must learn to recognize these changes in movement patterns of their babies.

Countries like the United Kingdom, which have successfully reduced stillbirth rates, encourage mothers to contact their caregivers if they notice any changes in fetal activity.

Unfortunately, the United States, despite its global prominence, continues to face a higher stillbirth rate than many other developed nations, a situation that cannot be ignored. Study has shown that countries that have made strides in reducing stillbirths focus on critical strategies such as public awareness campaigns, enhanced data collection, and thorough perinatal audits.

The achievements of other countries clearly show that the United States can make significant progress in reducing stillbirths, but we must act decisively and urgently.

Raising public awareness about the risks associated with stillbirth is the crucial first step to reduce stillbirths and save lives. Healthcare providers must engage in important discussions about stillbirth and evidence-based preventions with expectant mothers. Moreover, expecting mothers should become themselves and their babies best advocates by actively discussing these risks with their healthcare providers to ensure the best possible outcomes for their pregnancies.

As grieving families, we have the power to make a difference. By sharing our experiences across various media platforms, we can reach and inform as many families as possible. Additionally, we should not be alone in this fight. The U.S. Congress must prioritize stillbirth prevention by passing the SHINE for Autumn Act, which aims to improve data collection on stillbirths.

The legacy of our stillborn children should not be reduced to heart-rending statistics. Instead, it should inspire profound change to save lives so more babies will be born alive.