Posted: Feb 13, 2012 10:06 PM
Updated: Oct 23, 2013 1:03 PM
COLUMBIA - A Columbia family is sharing their story in hopes that other families can know they are not alone.
Shane Epping is trained to capture life moments. One of them is his pregnant wife, Mary.
"I was going to document every month and then I would have a progression," said Shane. "Candids you know I would look for moments with her. "
Beyond the smile of this mother due in just a couple months is the sorrow of knowing their baby might not survive the birth.
"I felt so lonely at first to not know anyone else who'd gone through what we're going through," said Mary Epping.
An amniocentesis confirmed the Epping child has Trisomy 18, a triplicated 18th chromosome. According to the trisomy foundation, more than 90 percent of Trisomy 18 babies do not survive past their first birthday.
Mary is 33 weeks.
"At the doctor, I said if I lost her would my body know and she said not necessarily," said Mary.
The Eppings created a blog to document their experiences with their baby. www.babyepping.blogspot.com
"We wanted to be able to have lots of experiences with the baby knowing considering we won't be able to do a lot with her after she's born," said Mary. "I would love to be able to bring her home and that her grandparents would be able to hold her and be here, and I don't ever want her to feel pain and just feel loved and know that she has parents in the family that love her. "
"My hope is that she makes it. That she doesn't give up and that she makes it, " said Shane.
The Eppings have named their baby Faye and are hoping to be a resource for other families in the future facing a similar uncertain picture.
While the odds are stacked against these babie,s some do in fact live on to many more years of life.
Rick Santorum's child has trisomy 18 and is three years old.
For more information about Trisomy 18, please visit www.trisomy18.org