A couple years ago I had the opportunity to do an interview with Stephanie and Andy. Their story was both heartbreaking and inspiring. In the interview, they share their profound experience of having a child with a terminal diagnosis of anencephaly. Similar to our other interviews, Stephanie and Andy were encouraged to terminate their pregnancy early on. Also like many of our interviews, they decided, “This baby is worth having,” and continued their pregnancy despite what the doctors suggested. Stephanie and Andy even created opportunities for their daughter, Grace, in-utero that she wouldn’t be able to experience after birth. For example, they went to the park and did things they would have done with her if they had the opportunity, and tried to be as much as family as they could in that moment. Although doctors believed that Grace would not live long after birth, she defied their expectations and lived 10 hours and 32 minutes. Grace touched many lives in the short amount of time she was here, and continues to inspire other families as well.
 
One of the impactful parts of Stephanie and Andy’s story, is what they did after Grace had passed. They founded an organization called Carrying To Term. “Carrying To Term is dedicated to providing non-directive information on pregnancy continuation for prenatal diagnoses of life-limiting conditions.” Their dedication to providing information and resources to women so they have the opportunity to make a fully-informed choice regarding their pregnancy is inspiring. They also have a section on their website dedicated to sharing stories of parents experiencing this difficult situation.
 
Finding people who are experiencing hardship similar to yours can be a powerful tool in getting through the grief of diagnoses like Grace’s. I know I’ve said it before, but although each story is unique, we are never alone in our grief. There are people out there who can empathize with our pain and help us get through it. I encourage you to check out Stephanie and Andy’s interview if you haven’t, and also visit their website to learn more about their wonderful organization.



Gerald Nebeker, Ph.D. Orange Socks President 

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