Deborah Cooper had been married for nine years, and for as many years, doctors told her it was unlikely she would ever have children.
"When you're told something like that, eventually you get used to that fact," Cooper said.
Cooper was surprised, then, when she became pregnant. Her first pregnancy ended in a miscarriage at eight weeks, and she chalked it up as a long shot. A year later, she was pregnant again, and can remember "breathing a sigh of relief" after surpassing the 12-week mark.
"We were getting really excited. We went in around the 15-week mark for a routine check on the baby; I was going to the clinic at [CAMC] Women and Children's," she said. "I was waiting on the ultrasound when the radiologist comes in and says, 'Well, there's bad news. It's not compatible with life.'
"I said 'What does that mean?'"
The radiologist went on to explain that Cooper's daughter had anencephaly, a condition that causes the absence of a part of a fetus' skull, brain and scalp during development. Anencephaly affects nearly one in 10,000 newborns, the vast majority of whom do not survive.
Cooper was given an option: she could terminate the pregnancy then, or try to carry the baby to term. Braelynn Gail Cooper was born on May 22, 2013, at 33 weeks, but died during birth.
"There's no cure for it, there is no way to fix it; very rarely do the children live through birth," she said. "We decided we would carry her to term, and let God do what he must. It was our child, and we had been wanting her forever."
During her pregnancy, Cooper joined a Facebook group for awareness of the disease. That is where she met Bethany Boggs, another local woman whose child was diagnosed with the same condition at Women and Children's on the same day Cooper had been.
"We became really good friends, and started a Facebook page for parents dealing with [anencephaly] here in West Virginia," Cooper said. "We were trying to figure out things we could do to get awareness out there for those who were dealing with it."
Cooper and Boggs decided to form a team to walk during Charleston's March of Dimes March for Babies on June 1. Cooper said the two recruited friends, family and co-workers to join their team, but decided they wanted to do more to raise money for the organization, which advocates for pregnancy care and awareness of birth defects and premature births.
The two plan to hold a yard and bake sale this Saturday in the parking lot of Cooper's workplace, Audiology and Hearing Aid Services, located at 2205 Washington Street E. They've a had a wealth of donations, including clothing, toys, baby items and furniture, and plan to sell as much of it as possible between 7 a.m. and 3 p.m. to raise funds for their team.
For Boggs, the walk and fundraiser is an opportunity to generate awareness and create a dialogue for those who have lost a child to anencephaly or a similar birth defect.
"Around 16 weeks we went to find out the gender, and that's when they dropped the bomb on us that she had anencephaly," Boggs said.
Boggs was given the same choice Cooper was after her child was diagnosed, and like Cooper, decided to carry her child to term. Cassandra Joan Boggs was born at 36 weeks on June 7, 2013, and lived for four hours.
"There was no other option but to carry her to term," Boggs said. "I didn't believe it at first; the ultrasound wasn't really clear, but looking back, now that I know she had it, I could see it."
Cassandra was Bogg's second child. Her first, a micro-preemie, was born weighing 1 pound 11 ounces and measuring 13 inches long. Her first daughter, now a healthy three year old, spent more than eight months in the NICU before going home, and is another reason Boggs felt strongly about finding ways to help the March of Dimes.
"My daughter got to hold [Cassandra] in the hospital while she was still alive, and even now, she goes up to the pictures we have of her and cuddles them," Boggs said. "She knows exactly who she is."
For more information on the March of Dimes, including local March for Babies events and ways to donate, visit www.marchofdimes.com.
Reach Lydia Nuzum at firstname.lastname@example.org or 304-348-5189.