By Rashaan Anderson
CAROLINA REPORTER & NEWS
Without the March of Dimes research, Charis Bigwarfe wouldn’t have made it.
Alexa and Jeff Bigwarfe were excited to find out they were having identical twins. But when Alexa Bigwarfe went in for her 20-week ultrasound, she received news that would change her and her family's life.
“We found out that they were suffering from a syndrome called twin-to-twin transfusion syndrome,” she said. “Which, if not treated, is 100 percent fatal and we were at stage three, which indicated that one, or both, babies were getting very very sick.”
Twin-to-Twin transfusion syndrome occurs when identical twins share a single placenta so that blood circulation can be shared equally among both twins. In the case of the Bigwarfe's twins, Kathryn was receiving too much fluid and Charis was not getting enough.
Nine and a half weeks later, Charis and Kathryn Bigwarfe were born. Charis Bigwarfe was born at one pound,10 ounces, and Kathryn Bigwarfe at just under five pounds. After two days in the neonatal intensive care unit, the buildup of fluids caused Kathryn to go into heart failure. She died Dec. 12.
“It was a very hard time,” Alexa Bigwarfe said. “But as sad as we were about Kathryn, we were distracted by the fact that we still had another one that we were trying to get healthy and bring home.”
While Charis Bigwarfe was in the NICU, doctors gave her lung surfactant and magnesium supplements, which would help strengthen her brain and lungs so that she could breathe on her own. After 84 days in intensive care, she was strong enough to be taken home. The family said that March of Dimes research into those life-saving methodologies played a major role in saving Charis' life.
“The thing about the March of Dimes that I think a lot of people don’t realize is that every person that has a baby is directly impacted by research that March of Dimes has done,” Alexa Bigwarfe said.
Half a million babies are born prematurely each year in the U.S. according to the organization, which funds research to find and prevent premature births. South Carolina’s preterm birth rate has risen to 11.2 percent from 10.8 in 2015. Through 5K events and donations, March of Dimes continues to fund research on helping babies that are born prematurely.
Along with being a March of Dimes advocate, Alexa shares her experience in hopes of helping other families dealing with the loss of a child.
“I started blogging about awareness, Twin-to-Twin Transfusion syndrome, I started blogging about NICU life and I started blogging about how you could help a family that is grieving using my experiences to speak to other people who may be looking for it,” Alexa Bigwarfe said.
She has also written a book, "Sunshine After the Storm: A Survival Guide for The Grieving Mother."
Charis Bigwarfe is now an active, healthy and confident six-year-old who has dreams of becoming a singer and helping babies like her late sister, Kathryn.