Newlyweds Stephanie and Andy were so excited when they found out Stephanie was pregnant. During an ultrasound, their daughter Grace was diagnosed with Anencephaly– a condition that is incompatible with life. Doctors told them if Grace made it to term, she probably wouldn’t make it through her birth. They told them if she made it through the birth, she would only live a few minutes.

After receiving that news, Stephanie and Andy were advised to see a perinatologist.  She confirmed the diagnosis and told them since they wouldn’t have much of a life with their baby, she could induce Stephanie early to terminate the pregnancy.  The young couple refused the offer.

The thought of terminating the pregnancy “compounded the devastation we were already feeling”.  These loving parents had already developed a love and connection to their daughter, Grace, and they decided to make the most of the remainder of the pregnancy.

Grace Born Alive Despite Having Anencephaly

Grace surprised everyone and made it to birth. Right after she was born, she cried. Stephanie recalls, “Her crying was music to our ears.” Within three minutes of her birth, extended family and a chaplain came into the room to baptize baby Grace.

After the baptism, Grace was returned to Stephanie where she nuzzled into her chest. That is where she stayed until she took her last breath 10 hours and 32 minutes after being born. Grace wasn’t in any pain during her short life and she was surrounded by those who deeply loved her.

Advice for Expecting Parents Who Have Received Anencephaly Diagnosis

Stephanie says, “Become fully informed of the diagnosis.” Once you have all the information, you can make informed decisions for you and your baby.

After Stephanie and Andy decided to see the pregnancy through to the end, they started making intentional decisions.They needed to figure out how to cherish moments with Grace while she was in utero. When it came time for Grace to be born, they intentionally decided how they would make the experience memorable.

Because Grace could pass away while in utero, Stephanie and Andy tried to show love each day. Love for Grace and love for each other. Andy shares, “There are really no regrets in that journey.”

Making the Most of a Fatal Diagnosis

Stephanie and Andy have used their experience to help others. In June of 2016, they created the nonprofit organization Carrying To Term. It offers support, resources, and tools to the medical community, parents, friends, and relatives.

“Grace gave us a purpose for sure.” Stephanie and Andy firmly believe they were meant to create this organization but they wouldn’t have had a reason to if Grace hadn’t been a part of their lives.

 

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