Stephanie Schoonover and her husband Andy were still newlyweds when they learned they were expecting their first child. Ecstatic at the news, their hearts were broken when, during their 12-week ultrasound, they learned that their baby girl had anencephaly, a neural tube defect in which the skull and brain don’t develop properly. Their baby was going to die before or shortly after birth. When a perinatologist told them they should abort their daughter, the couple immediately refused abortion and walked out of the appointment. They chose life. They spent the rest of the pregnancy holding onto every moment and memory they could with their baby girl.
“We were five months newly married so it was like we had an amazing wedding and honeymoon. We were on top of the world,” Schoonover told Live Action. “Kind of picture perfect and shortly after we fell into this really dark place of grieving that nobody in our network or community or anyone we had known had been through before.”
The doctor who gave them the diagnosis was “extremely supportive” and answered all of their questions. The couple was then sent to a perinatologist to confirm the diagnosis, and that’s when they were told they should terminate.
“The perinatologist encouraged us ‘to induce early’,” said Schoonover. “Our immediate response was we wouldn’t terminate and we said the appointment was over and ended it at that point.”
They knew they would be carrying the pregnancy out for as long as possible and hoped that their baby girl, whom they named Grace, would survive through all nine months. In the meantime, they would spend as much time doing the things they had dreamed of doing with her after she was born. They took her to the park and Schoonover swung on the swings with her. They held a celebration of life party shortly before her birth. They traveled with her to visit family and friends and even went as far as Spain and Hawaii creating memories together. They chronicled their trips by journaling what Grace was doing at specific times in specific locations, cementing those precious moments with her in their memories.
“It saved us because we started experiencing so much joy when we were just treating her like an integral part of our family like she is,” said Schoonover. “I was able to focus on my time with her and we treated my pregnancy like that day could have been the last day because we knew that’s what we were up against.”
At 27 weeks gestation, Schoonover rushed to the hospital, scared that she had lost Grace. She hadn’t felt any movement from the baby girl and worried she had passed away overnight. Just as the doctor placed the ultrasound wand on Schoonover’s belly, Grace kicked, letting her mother know that everything was okay. Her parents were relieved. They wanted to spend more time with her and experience as much of her as possible. They prayed that she would come on her own time with a labor that started naturally, something the doctor didn’t have high hopes of. But that prayer was answered.
“Four days from my due date I went into labor,” said Schoonover. “We would have had to induce if she didn’t come on her own and I was really worried that we would be deciding her death date by choosing when she was going to be born and we didn’t want to do that.”
By the time the first signs of labor began, Schoonover says she was at peace and ready to meet her daughter face to face.
“I felt like I had received an invitation to do really sacred work – something that was going to be, of course, difficult, unique. It was something I was supposed to do,” she said.
Schoonover labored at home for 12 hours before going into the hospital. She calls it a “joyful time” because the doctors were prepared to meet the wishes in her birth plan and for the moments that followed, and the nurses had experience in bereavement care.
“They just couldn’t have treated us any better,” she explained. “So we had family arrive and once it was time for me to push we weren’t sure whether or not Grace was going to make it through the delivery. She came out crying and that was music to our ears.”
The couple had prayed for at least a minute of time with Grace after birth. Not knowing how much time they would have with her, the couple enjoyed every moment talking to Grace, reading her books, praying over her, and kissing her. She stayed on her mother’s chest, skin to skin, for her life outside of the womb, knowing only the love that was given to her. She lived outside the womb for 10 hours and 32 minutes – another answered prayer.
“I had done my job and given her the time she was supposed to have and helped her live her story and that was really powerful. […] We’re really proud of our experience and really proud of Grace and have no regrets for anything we did during the pregnancy or our time with her,” said Schoonover. “We were present on the journey and intentional with our time with her.”
With the help of a photographer and their cell phones, the couple was able to record not just video and photos but audio of baby Grace and the beautiful sounds she made as she gripped her mother’s finger and lived out her life.
Since the loss of Grace, the couple has given birth to two more great achievements: their daughter Ava and the foundation they created called Carrying To Term. Through Carrying To Term they are working to change the conversation used when parents receive a terminal prenatal diagnosis. While most doctors simply advise abortion, they should be fully informing parents and telling them that they can choose life. They can carry to the natural term of the baby’s life and give birth to their child. By providing the doctors with information and resources to pass on to parents, including studies that show carrying to term has better long-term emotional effects on parents compared to abortion, they are equipping doctors and parents with the knowledge that abortion isn’t the answer. That abortion isn’t the only choice out there, even when the rest of the world might be acting like it is.
In addition to working to equip and educate doctors, Carrying to Term works with parents who choose life, helping them navigate their pregnancy, create a birth plan, and receive the support and care that they and their children deserve.
Grace’s life may have been brief but she is bringing much-needed change to the culture as her parents work in her honor to help doctors give their patients real choices and help other parents choose life.
“We have no regrets,” said Schoonover. “Her life has given us purpose in our own life, and that’s what we live for now.”