Brandi Rogers and her husband Michael learned during a 20-week ultrasound that their daughter Emersyn has anencephaly. Her brain and skull didn’t develop properly, and children with the condition usually die shortly after birth. The parents were offered the option to abort their daughter, but they refused. Instead, they are carrying Emersyn to term in hopes of donating her organs.
“It’s for Emersyn,” Rogers told Good Morning America. “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 [abortion] wasn’t something we were going to do.”
Already parents of two, the couple was shocked by the diagnosis, but decided they want to donate Emersyn’s organs for anencephaly research. Their hope is that their daughter can help researchers find a way to help other families who will face the same diagnosis in the future.
“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,” explained Rogers. “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.”
After seeing the story of Royce and Keri Young who carried their daughter to donate her organs after receiving the same diagnosis, Rogers was inspired to do the same.
“I don’t want her to ever be forgotten … she wasn’t just a baby that never made it,” said Michael Rogers. “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.”
In addition to creating a legacy for Emersyn, her parents also want to celebrate her life and not focus on her death.
“We decided to embrace it,” said Rogers. “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.”
Conrad Williams, MD, director of the Palliative Care Program at the Medical University of South Carolina, told ABC News that he 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. Our focus is on providing patients and families with support or relief for any of the challenges that come forth,” explained Williams. “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.”
Emersyn is due to be born in early September.