- Associated Press - Monday, May 22, 2017

EFFINGHAM, S.C. (AP) - Michael and Brandi Rogers were shocked to learn that Brandi was pregnant only seven months after giving birth to their daughter, Haigan.

With Haigan and their 3-year-old son, Lawson, at home, Brandi and Michael knew they would have their hands full with a third child. Once the initial shock subsided, however, they were excited about their future as a family.

At 11 weeks pregnant, Brandi went in for an ultrasound and was shocked yet again when the doctor noticed the baby had fluid on its brain. Upon further examination and multiple ultrasounds, the child was diagnosed with anencephaly, a fatal birth defect that causes a baby to be born without parts of the brain and skull.

“I just kind of froze,” Brandi said. “They told me her head was cut off at her brain stem. When somebody tells you that, I don’t even think you know what to do.”

About three pregnancies in every 10,000 in the United States are affected by the condition. The causes of anencephaly among most infants are unknown, and nearly all babies born with anencephaly will die shortly after birth, according to the Centers for Disease Control and Prevention.

Brandi came home sobbing and told her husband the diagnosis. From there, the couple researched anencephaly and weighed their options to decide on a course of action. Brandi joined Facebook groups and spoke with other parents who have faced anencephaly, some of whom elected to terminate the pregnancy upon diagnosis.

The couple did not want to terminate the pregnancy, but they considered inducing labor early. They discussed it with their doctor, who said the Rogers would face legal issues and other barriers, and they would need to travel to another state for treatment. Ultimately, Brandi and Michael decided to carry their daughter, Emersyn, to full term. By allowing Emersyn to grow to 37 weeks, Michael and Brandi hope they will be able to donate her organs to either medical research or for neonatal transplants.

“I don’t think going to term is for everybody, but if a lot more people spoke about it, a lot more people would be open to going to full term,” Brandi said. “There’s a sense of closure in getting to hold her and see her, for me. I want her to be with me when she passes.”

“We’ve come to grips with it, and we’re at peace with our decision,” Michael said. “We know what the outcome is going to be, but we still want her (Emersyn’s) life to have meaning.”

Before Emersyn’s original due date in September, Brandi and Michael are hosting a 5K Run/Walk in honor of their daughter. The proceeds from the event will go toward the family’s funeral costs and medical expenses. Any money left over will be donated to Anencephaly Hope, a support group that offers care packages to families with anencephalic babies.

Brandi and Michael hope that by spreading awareness about Emersyn and her condition and donating her organs to research, they will prolong Emersyn’s life in ways other than living.

“She’s going to matter for something,” Michael said. “I want her to have some sort of a legacy.”

“I want people to know about her and think of her as a baby and not as anencephaly,” Brandi said. “She’s going to make an impact in just hours of life. I find a lot of peace in that.

“She’s more than a diagnosis. She’s still a human being, and she’s still important to us. She’s always going to be our third child.”

To donate to the Rogers’ GoFundMe page, visit gofundme.com and search for the “Medical Bills for Baby Rogers” page. To sign up for the 5K Run/Walk on Aug. 5, visit the Facebook event page titled “Emmy’s 5K Run/Walk.”


Information from: Morning News, https://www.scnow.com

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