She sits in silence as the doctor’s words wash over her. Her mind reels as the sound of “Holley, Your baby has Down Syndrome” keeps replaying in her head. Holley Snow takes a breath and begins a journey that will take her and her baby through a gauntlet of hospital stays and medical procedures.
Former communications director Holley Snow shares her story of the complications of giving birth and the months of pain and struggle that occurred afterwards. Her baby, Wynter Snow, was born with Down syndrome, esophageal atresia, and an atrioventricular septal defect.
“I mean there were just so many questions, there were so many things I wanted to ask,” Holley Snow said. “All of the thoughts are interesting to think about in those stressful moments.”
While Holley was pregnant, she had genetic testing done which consists of a blood test and sonogram. At 14 weeks along, doctors found out that her baby would be born with Down Syndrome.
“One of the first rules of pediatrics is you just rip the Band-Aid off and don’t sugarcoat anything to the parents,” Holley Snow said. “I was struggling with the diagnosis, and I would be lying if I said I didn’t bawl my eyes out for weeks.”
Doctors also discovered a congenital heart defect and the possibility of esophageal atresia, or a defect where the esophagus does not connect to the stomach. She also had a lot of excess fluid in her stomach, and there was a speculation that the baby could swallow the amniotic fluid.
“Doctors can tell a lot of things, but they just can’t know everything until the baby is born,” Holley Snow said. “This was one of those moments where it was hard to detect until the birth.”
Wynter Rhea Snow was born on Oct. 19, 2021 by a C-section. When Holley was holding Wynter for the first time, she noticed that she wasn’t opening her mouth to swallow her spit, something unusual for a newborn.
“Instantly, I began asking questions to the doctors,” Holley Snow said. “It was hard to not to because I was scared.”
Wynter was taken across town to the surgical NICU due to a gap created by her esophagus. At the hospital, Wynter went into heart failure. The doctors shaved portions of her pericardium, but she had an atrioventricular septal defect, or a giant piece of her heart that was missing.
“Watching your child go into heart failure is something I would never wish on anyone. It is horrifying,” Holley Snow said. “The only thing I could think of is telling Wynter, whenever it’s time, tell your heart to beat again.”
Wynter experienced many complications after heart surgery. She flatlined, and the doctors gave her small doses of epinephrine, but then resorted to full doses. She ended up spending 199 days in the NICU.
“I stood in the corner and all I could come up with was ‘God please,’ ” Snow said. “She’s bottoming out and for whatever reason because we’re a family of faith, I believe there is a God that answered in that moment.”
At five months old, Wynter was AirMed flown to John Hopkins Hospital in Florida to fix her esophagus, which didn’t reach her stomach or allow her to swallow. Surgery took over 12 hours.
“I don’t know if you’ve ever had those moments in your life where it’s like the entire world would stand still,” Holley Snow said. “I wouldn’t wish this on any parent.”
Wynter has had seven surgeries and has 22 scars from them. Despite all of the complications after her birth, she now lives healthily at home.
“I think what I would say to any Mom, Dad, or parents walking through a really difficult time while everyone is telling you that this isn’t a sprint, it’s a marathon,” Holley Snow said. “I have had breakdowns over and over again and I would say to any of those parents today is not forever, today is not forever.”
