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Friday
May262017

South Carolina couple to carry baby with fatal condition to term

Brandi Rogers(NEW YORK) -- A couple carrying their terminally ill child to term is hoping to donate her organs and help keep other parents from facing the same fate.

Brandi Rogers' unborn daughter, Emersyn, was diagnosed with anencephaly when Brandi was 20 weeks pregnant. Anencephaly is a birth defect where a baby is born without parts of the brain and skull.

"It's for Emersyn," Rogers said. "She's a sister and she's a daughter and it's not just for organ donation. It gets a lot deeper than that. You're in a room and you're listening to your baby's heartbeat and then you go into another room and they say, 'Well, you can stop it.' That's extremely hard."

"We decided on the spot that it wasn't something we were going to do," she added.

Rogers, 25, a mom of two from Effingham, South Carolina, said she and her husband, Michael Rogers, learned of their baby's condition after an ultrasound technician noticed fluid on the brain.

"I think I kind of sat there when they told me," she added. "It's just one of those things you don't think could ever happen to you, especially when I have two healthy children."

Michael Rogers, 29, told ABC News that hearing his daughter's diagnosis put him in a state of shock and that he had never before heard of anencephaly.

"When we first found out ... I think [the doctor] said it was a 75 percent chance survival rate," he continued. "We kind of held onto hope for that. I really thought she was going to make it. We went back and they pretty much told us there's no chance."

About 3 pregnancies in every 10,000 in the United States will have anencephaly annually, according to the Centers for Disease Control and Prevention.

Conrad Williams, MD, of the Medical University of South Carolina, told ABC News that there is no known cause of anencephaly.

Williams is the director of the Palliative Care Program at MUSC and will be working with the Rogers after Emersyn's birth.

"Many of these babies are stillborn and many of the babies born alive typically only live for hours or days," Williams said. "Our focus is on providing patients and families with support or relief for any of the challenges that come forth. If they can remember the brief moments that they had with their child ... it will help them tremendously in the grieving process, that's really our goal."

Because Emersyn has a grim chance of survival, Brandi Rogers said she could have made the choice to induce early, which would terminate the pregnancy, but decided otherwise.

"When we got home and we were researching, I was looking for a voice of someone who went full term and didn't regret it," Brandi Rogers said. "I want to be that voice. It's OK to celebrate Emersyn even though she's not going to survive. She's still our third child and she's still very much loved."

In March, parents Royce and Keri Young of Oklahoma, spoke out in an interview with ABC News' Good Morning America, after their baby was diagnosed with anencephaly like Emersyn. The Youngs also decided to carry their child to term in order to donate her organs and, hopefully, save the lives of others.

Brandi Rogers said she was inspired by the Youngs' choice to donate their baby's organs, but more so believes her child's birth deserves to be celebrated.

"We decided to embrace it," she added. "I think with pregnancy loss and infant loss and miscarriage and stillborn, it's so taboo and nobody talks about it. I think it would do women a lot of good to speak about that."

The Rogers said they would like to donate Emersyn's organs to anencephaly research. They also hope sharing their daughter's story will show other parents that they are not alone.

"I don't want her to ever be forgotten ... she wasn't just a baby that never made it," Michael Rogers said. "I'd love to start an organization in her name for this specific type of disease. That could be her legacy. I don't know how to start that, but that would be something I'd love to do."

Brandi Rogers' due date is Sept. 11. She will give birth at McLeod Regional Medical Center in Florence, South Carolina.

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