AUSTIN (KXAN) — Twelve weeks into their pregnancy, an Austin couple received devastating news as they watched their baby through an ultrasound. The doctor said the baby had a birth defect, and wouldn’t survive long after being born.

“We were newlyweds, kind of high on life, to now living in a really low and dark place,” said Stephanie Schoonover. “It just made you feel completely hollow because this is your baby and on-screen she looked perfect.”

They were faced with a heartbreaking choice: terminate the pregnancy or carry it to term.

Dr. Shannon Abikhaled with the OBGYN Group of Austin, says most doctors recommend terminating the pregnancy for the mother’s physical safety. However, newer research suggests this might not be the best option for everyone.

“For women that really want to be pregnant, that are looking forward, haven’t even contemplated termination at all, when they’re given a terminal diagnosis that the baby’s not going to make it, and they have an abortion at an earlier time, they actually psychologically don’t do as well,” said Dr. Abikhaled. “They often have Post Traumatic Stress Syndrome, to the point where it’s about the same as if you lost baby in the second trimester.”

Stephanie and Andy Schoonover created the nonprofit Carrying to Term, to help families who receive a terminal prenatal diagnosis
Stephanie and Andy Schoonover hold their baby who only lived 10 hours. They created the nonprofit Carrying to Term, to help families who receive a terminal prenatal diagnosis (Family Photo)

Dr. Abikhaled says because technology is helping doctors detect genetic disorders earlier, more women find themselves having to make this difficult decision.

For Schoonover, the right choice for her was to carry the baby to term.

“We knew we were going to love Grace for all the time we had with her, each day was truly a gift with her and we wanted to love her well,” said Schoonover. “Once we received the diagnosis we went home and really just started looking at how we were going to live this journey out, and for me it meant going online and searching for other mothers in the same situation,” said Schoonover.

But when she went online, she quickly realized how few resources existed for parents going through this. Stephanie and her husband Andy decided to fill the gap, starting a nonprofit called Carrying To Term, a place women can find information, resources and support.

“In addition to the devastation, you don’t know what to ask. You don’t know what you don’t know,” said Stephanie. “We feel it’s really important women have a clear understanding about: What does it mean to carry a pregnancy to term? And what info is out there to support me in that journey.”

Among various resources on the website, women can find information on gathering a care team and creating a birth plan. They can also connect with other women and hear their stories.

“Even though it may not be what you hoped for or envisioned, you can still embrace that and still offer a lot of love and still create memories,” said Stephanie. “It’s my way to continue sharing her and honoring her while coming alongside women and supporting them in their own journey.”

Dr. Abikhaled says thankfully terminal pregnancies are rare, about three to four percent. She says most of the time it has to do with genetics, but can also be cardiac or renal (kidney). Many times the baby can survive in utero with support of the mom, but wouldn’t be able to survive on its own.

When Grace was born, Stephanie and Andy had 10 hours with her before she passed away. Now they cherish keepsake items of Grace, like her baby blanket and footprint stamped in their Bible. They also have a swing in the backyard dedicated in her memory.

While the decision to carry to term may not be for every mother, Stephanie hopes to at least educate those who are trying to navigate through the difficult process.