In 2011, Stephanie and Chad were thrilled to find out they were expecting their first baby. However, their happiness quickly turned to fear when they went in for their first ultrasound.
The couple decided to take part in a routine first trimester screening, which is designed to look for indicators of Down syndrome, Trisomy 13 and Trisomy 18. Although the results of the screening wouldn’t change anything about their pregnancy, they wanted to be informed if their baby had any abnormalities.
Unfortunately, the screening showed that their baby had Limb Body Wall Complex, a rare and complicated development disorder. The condition is almost always fatal and characterized by severe congenital anomalies in the baby with anterior body wall defects and (or) limb defects. It is so rare that there have only been 250 cases reported in literature.
When the doctor told her about her baby’s condition, she said, “It’s always hard to give bad news with a first pregnancy.” Then she told them they had two options. They could drive to the Twin Cities to have an abortion or Stephanie could be induced at 24 weeks, which was considered the earliest point the of viability.
Stephanie and Chad decided to choose life for their baby despite their baby’s horrific diagnosis. Stephanie said, “I had never believed in abortion, but that day my belief became my reality.”
Then they were given the option of viewing a 3D ultrasound of their baby. Stephanie said “I was terrified of what I might see as our physician had explained that our baby’s organs were outside the body, the brain was not necessarily enclosed in the skill, the baby had club feet and the umbilical cord was short and the baby was likely attached to the placenta in front. What I saw on the ultrasound was nothing short of a miracle. I watch watched our tiny little girl hold her knee with both hands, suck her thumb and hold her big toe with one hand. For a baby who was supposed to be incapable of virtually everything – she was a modern day miracle in my eyes.”
In the days that followed, they prepared for their baby’s arrival and worked with a palliative care team who helped them develop a birth plan for their baby and make many decisions about the future. Sadly, one of their tasks was to plan a funeral.
On August 15, 2011, after 27 hours of labor, Stephanie gave birth to their daughter, Emmalynea Isabella. She passed away ten minutes before she was born but the couple has no regrets about their decision to choose life.
Stephanie concluded, “At a little less than 1.5 lbs and 10.5 inches long, I never knew how much such a tiny person could change your life. Though baby Emmalynea had passed just ten minutes before she was born, her life had been cherished to the very end. Emmalynea was the most beautiful baby I had ever seen, not despite her physical challenges, but every single part of her. She had the most beautiful little feet, perfectly formed tiny toes. Her feet were only as large as the tip of my thumb, the smallest feet I had ever seen.”
Amazingly, a funeral director who was moved by their story covered all the costs for their daughter’s funeral. Stephanie credits Emmalynea for bringing her and her husband back to their faith and changing how they parent their two boys; Mason (2) and Gauge (4 months).