In March 2016, Makaela Parsons was 38 weeks pregnant and eagerly awaiting the arrival of a baby girl named Kemptynn. She began feeling pain and fatigue but knew that women at this stage of pregnancy are often uncomfortable and thought that any discomfort was typical. When she noticed that Kemptynn had stopped moving regularly, her doctor advised her to count the baby’s kicks. After 30 minutes of feeling no movement, she and her husband Travis decided it was time to go to the hospital.

After initially being unable to find Kemptynn’s heartbeat, a nurse said she could hear it. “We didn’t know it at the time, but what she found was my heart rate,” said Parsons. “I was so nervous that my heart rate was skyrocketing and you have several arteries down there. The doctor said we needed to get Kemptynn out via C-section because the heart rate wasn’t consistent. We got to the OR and as I was going to sleep, I felt them moving the doppler around my stomach in different areas. Even then, I thought, ‘Oh no, they’re not finding it.’ When I woke up, Travis was holding the baby and crying. My mother was there. I remember thinking, ‘Why is my mom here? She wasn’t here before.’ That’s when I was told by the doctor, ‘I’m sorry kiddo, but she didn’t make it.’ I realized Kemptynn was gone, but I didn’t understand what was happening. I was still very foggy coming out of it. They put the baby on my chest. It was the worst thing ever. I remained in the hospital a few days. I realized this was all the time I would ever have with her, so we did spend a lot of time holding her and planning her funeral.”

Kemptynn had been stillborn due to a concealed placenta abruption. Often when a woman’s placenta separates from her uterus, there is profuse bleeding, she rushes to the hospital, and the baby is delivered safely. In Parsons’ case, the bleeding had been internal. Not only did this mask the symptoms of the abruption, but internal placenta abruptions are often fatal for both mother and child. 

According to the Centers for Disease Control and Prevention, between 10-20% of pregnancies end before 13 weeks of gestation. About 1 in 160 pregnancies end in stillbirth, when the fetus is delivered after 20 weeks of pregnancy. Furthermore, 5.4 out of 1,000 infants die before their first birthday, due to illnesses, injuries, prematurity, low birth weight, Sudden Infant Death Syndrome (SIDS), and other causes.

Parents who experience baby loss have a variety of physical, emotional, and psychological needs that often go unmet. Several nonprofit organizations in the Omaha and Lincoln areas work to address these needs.

“Whether it’s an eight-week miscarriage, a stillbirth, or newborn death, you’ve still delivered a baby,” said Jolie Vega, president of No Footprint Too Small. Vega founded the organization after her own son Judah was born still at 41 weeks. “A mother is often still lactating, experiencing ongoing bleeding and hormonal changes. Women often tell me they couldn’t even focus on their grief because they were still trying to heal their bodies. There may also be trauma involved for the partner who witnessed the delivery. Maybe a part of the procedure was a hysterectomy and the loss of hope of future pregnancies. There are lots of layers that come with our grief, primarily the loss of the baby, but also secondary losses, such as our hopes and dreams and the future we imagined with the baby.”

“The main thing parents will say is that they want to be able to say the name of their baby and talk about their baby to friends and family,” said Tanya Shute-Kadey, coordinator of the Pregnancy and Infant Loss Group at The Collective For Hope. “Unfortunately, many people will think, ‘I don’t want to say anything; I don’t want to upset them.’ But you can’t possibly upset us more than we already are. In fact, most loss parents would put up a billboard because they’re so scared that other people will forget their baby. They need to be able to grieve, but sometimes people don’t want other people to grieve, because it’s uncomfortable to witness.”

Tracy Pella, president of Connected Forever explains, “These parents have a need for community, to connect with other families that have experienced a similar journey.” Pella and her husband Jesse co-founded the organization after her son Cohen passed away on the day he and his twin brother Cooper were born. “Not all of our journeys are the same, but whether you lose a child early in a pregnancy, later in a pregnancy, or only have a short time with your baby after birth, the experience of losing a child bonds us. We don’t even have to say anything. Just being in the same room with another mother or father who has lost a baby, you can feel the connection.”

“A lot of parents want a reason,” said Lisa Barton, secretary of the Nebraska SIDS Foundation, who lost her daughter Macie to SIDS. “But often there is no reason. They need a sounding board, someone who has actually been through it.”

October is Pregnancy And Infant Loss (PAIL) Awareness Month. Many organizations commemorated the occasion with events designed to give parents the opportunity to personally reflect on the babies they’d lost and also give them opportunities to talk about them, create memorabilia, and connect with other parents with similar experiences. On October 15, organizations around the world celebrated the Wave of Light. Loss parents in every time zone lit candles or lanterns at 7:00 PM, creating 24 hours of continuous light.

Six years after the loss of Kemptynn, Makaela Parsons helps to coordinate the Wave of Light event for Connected Forever, which took place at Camp Sonshine in Roca. “It’s my way of giving back, staying connected, and feeling like I’m doing something in honor of Kemptynn and sharing her story.”

Anika Borremans attended a Wave of Light event put on by No Footprint Too Small at Antelope Park in Lincoln. After losing one of her twin sons, Joram, at 29 weeks of gestation in 2018, she began attending Wave of Light events with other family members and relatives. She wants other people who have experienced baby loss to know that they are not alone and that it’s okay to talk about it even if it’s awkward or makes people uncomfortable. “Make people uncomfortable,” she said. “Just talk about it. When you feel led to talk about it, when it comes up in conversation, just talk about it. It’s how we honor our children’s lives. When a baby is born, it’s a mother’s instinct to protect her baby. When a baby dies, it’s a mother’s instinct to protect their memory.”

Find Support

Collective For Hope offers a virtual baby loss support group on the 2nd Thursday of each month, an in-person baby loss support group in Omaha on the 4th Thursday of each month, an 8-week family support group for families experiencing grief of any kind, an annual Wave of Light event, and a 5k remembrance walk. For more information, visit www.thecollectiveforhope.org or email pail@thecollectiveforhope.org.

Connected Forever hosts in-person meet-ups for parents and entire families in and around Lincoln, support groups, family retreats, an annual Wave Of Light event, and private Facebook support groups.  For more information, visit connected4ever.org or visit their Facebook page.

Nebraska SIDS Foundation provides information, resources, and over-the-phone support to parents who have lost children to SIDS, as well as information and resources to OBGYNs, pediatricians, and coroners. For more information, visit http://www.nebraskasidsfoundation.org/, email info@nebraskasidsfoundation.org, or call (402) 935-1911.

No Footprint Too Small offers care packages to parents who have experienced baby loss, weighted memory bears, psychoeducational materials about grief, vouchers for mental health services for uninsured or underinsured loss parents, assistance in locating a counselor who meets a parents’ specific needs, Spectra breast pump rental for people who are still lactating after the loss of a baby, restorative yoga classes, and hosts a Wave of Light event in October and events surrounding Mother’s Day and Father’s Day. For more information, visit www.nofootprinttoosmall.com, email info@nofootprinttoosmall.com, or visit their Facebook page.