When Stephanie Schoonover and her husband first got the gutwrenching news [1] at their 12-week ultrasound that their baby daughter Grace would be born with anencephaly, a deadly birth defect when babies are born without parts of their skull and brain [2], they felt like they could never recover. Despite being told by doctors to terminate the pregnancy, Stephanie decided to carry the baby to term knowing that Grace would likely die shortly after being born.

Stephanie told POPSUGAR how getting the terrible news changed the rest of her family's life forever.

Hearing the doctor describe the diagnosis was absolutely devastating. I couldn't begin to comprehend the news that our baby's life was going to be taken from ours — hot tears uncontrollably ran down our faces and questions began racing through my mind. I was looking at Grace's silhouette on the ultrasound and she looked perfect to me, which conflicted with everything I was hearing. The news was paralyzing and left us feeling empty and helpless, but the pain of the diagnosis pales in comparison to the yearning we have to experience more of our daughter since meeting and holding her.

After making the decision to carry Grace to term, Stephanie and Andy vowed to make as many family memories [3] as possible with Grace and even took maternity photos to commemorate the pregnancy, explaining that "the diagnosis didn't define her or change our love for her." When the time to deliver Grace came, Stephanie and Andy were ready to meet their little girl:

We spent our time studying her, watching her chest rise, and memorizing her sounds. I had intentionally and thoughtfully prepared for the birth experience I was hoping for. We hired a photographer who also took video, we read books together, we told Grace all the reasons we loved her and why she was so important to us, we recorded her cries and sweet little noises. The time we spent as a family was joyful — we were ready to meet Grace, although preparing to say goodbye to her was impossible.

Sadly, Grace passed away after 10 hours and 32 minutes on May 22, 2015.

The couple knew they had a long road of recovery emotionally and started the grieving process by regularly meeting with a grief counselor and truly "leaning into the pain and embracing the deep sorrow I was experiencing." Stephanie and Andy also decided to return to Grace's hospital room and read all the cards and letters they received there to help work through their enormous feelings of loss. They wrote out thank you notes to all the doctors and nurses who helped them through the tough time. And while Stephanie admits that the mourning period is especially long and hard, it made her feel closer to her baby girl.

The Schoonovers welcomed their second daughter, Ava Grace, in August 2016, and have since been helping other families by founding the organization Carrying to Term [4], which provides support, resources, and tools to families who are also facing terminal prenatal diagnoses.