At a routine ultrasound 12 weeks into her first pregnancy, Stephanie Schoonover and her husband, Andy, were devastated to learn their baby had anencephaly, a fatal birth defect that causes a baby to be born missing parts of the skull and brain.
The Austin, Texas couple sought the opinion of a specialist, and said they were advised to terminate the pregnancy.
"That was just something we couldn't fathom, and so we ended the appointment and came home to feel the real grief," Schoonover told TODAY Parents. "You don't start a pregnancy thinking death will be meeting you at the time of birth, but for us, Grace was not her diagnosis and her diagnosis was not Grace. We looked at her as our daughter from the time we found out we were pregnant with her."
The Schoonovers made the decision to carry the pregnancy to term, knowing that if baby Grace survived delivery, she would die shortly after birth.
"We felt so much love for her and we wanted to be her parents," said Schoonover. "We saw her as already being a part of our family, so the diagnosis didn't define or change our love for her. We decided to be intentional with the time we did have with Grace, building her story and allowing her to live her life until her natural death."
The Schoonovers spent the next several months making memories with their daughter in utero — taking maternity photos, playing with her as she kicked in Stephanie's stomach, and celebrating the time they had together as a family.
Shortly after she reached 39 weeks gestation, Schoonover went into labor.
"We knew that it was very possible — and would be quite likely — that labor and delivery would be too difficult for her and that she may pass in those moments," said Schoonover.
Instead, Grace Elisabeth Schoonover was born — alive and crying — on May 21, 2015.
"It was absolutely the most incredible sound — one we will never forget," said Schoonover. "When she was placed on my chest, Andy crawled into the bed with me and had his arms around her as well. We would hold her hand a lot because she had the natural reflex of gripping our fingers, which was also something I never expected."
Grace lived for 10 and a half hours before dying on Stephanie's chest in her hospital bed on the morning of May 22, 2015.
"We really just spent the time staring at her and taking her in," Schoonover continued. "We spent time telling her all the reasons we loved her, and we shared why she was important to us and told her we would carry her with us always."
After Grace's death, the Schoonovers spent an additional 14 hours with their daughter's body, bathing and dressing her, taking time to grieve their loss.
Schoonover says returning home without their daughter was difficult. In the following months, the couple, who married in June 2014, began to move through the grieving process by attending counseling, visiting the doctors and nurses who cared for them during Grace's birth, and starting Carrying to Term, an organization that provides support and resources for other expectant families facing a fatal diagnosis.
"Either way, it's a really unfortunate loss and whether you were to terminate the pregnancy or carry to term, there's grief involved in that," Schoonover added. "All of the pain and all of the grieving we went through has absolutely been worth it. She is worthy of grieving over."
The Schoonovers welcomed their second child, a daughter named Ava Grace, in August 2016.
"We're proud parents of both of our girls," said Schoonover. "And it's a real responsibility to carry on Grace's legacy as much as it is to love and parent Ava."