A Utah mother faced the most gut-wrenching decision of her life when she learned her unborn son had a terminal condition, leaving her feeling as though her “soul had left her body.” Madysen Wilcox, 29, was already aware of complications in her pregnancy, but nothing could prepare her for the heart-breaking news that her baby’s brain had not formed properly.
The journey began at six weeks when Madysen experienced spotting, which led doctors to suspect a miscarriage. But just weeks later, she was blindsided by devastating news that would change her family’s future forever.
“On the day we received the diagnosis, it felt like time stopped,” Madysen recalled. “The ultrasound technician was quiet for what felt like forever while she examined Charlie’s brain and heart. When the doctor walked in with the diagnosis, it felt like I was watching myself react to the news. My soul left my body.”
Madysen and her husband, Darin, 34, were shattered to learn their unborn son, Charlie, was diagnosed with Alobar Holoprosencephaly, a severe condition that prevents the brain from properly separating into two hemispheres. This rare birth defect occurs in about 1 in 7,500 births, leaving the couple in disbelief.
Faced with the “impossible decision” to terminate the pregnancy or carry Charlie to term, the couple felt immense pressure. Initially, they chose to terminate, not wanting their son to suffer. But after praying and reflecting on their options, they realized carrying the pregnancy to term might bring them peace and closure.
“Being devout Christians, we turned to God for guidance,” Madysen shared. “In many ways, carrying Charlie has drawn our family closer together.”
Before the diagnosis, the couple suspected their baby might have Down Syndrome, based on previous tests. When they learned the diagnosis was far more severe, Madysen was overwhelmed with emotion. “I cried so much that day; it felt like the tears would never stop.”
With two healthy children already—Hayvn, six, and Harvey, three—the couple was puzzled by Charlie’s condition. As doctors remain unsure of the cause, Madysen is determined to discover if it was a genetic issue or simply an “unfortunate fluke.”
Looking back on her tumultuous pregnancy, Madysen shared, “We had been trying to conceive for almost a year and finally got the news in February 2024. Then, at six weeks, the complications began with spotting and bleeding. I thought my world was crashing down around me.”
As Madysen navigated her emotional rollercoaster, she wrestled with feelings of hope and despair. “We were blindsided with a fatal anomaly when we had only prepared for the possibility of Down Syndrome. The hardest part is knowing we could meet Charlie and then have to say goodbye immediately.”
Despite the challenges, Madysen has found strength in connecting with other moms who have faced similar heartbreaks. “Carrying Charlie has blessed me in ways I never expected. He has brought me and Darin closer together as a couple and has helped me connect with so many wonderful moms.”
The couple is preparing for every possible outcome, fully aware that Charlie’s condition is rare and unpredictable. “We’re bracing ourselves for every scenario,” Madysen reflected. “It’s incredibly painful to watch my friends take home healthy babies while we face this uncertain journey.”
Madysen’s story serves as a powerful testament to the strength of love, faith, and resilience in the face of unimaginable heartache. Her journey highlights the profound connections that can emerge even in the darkest times, reminding us all of the incredible power of family and faith.