After Bailey Schafer was born, her mother Roxanne Turner would hold her and pray in the hopes of hearing her voice, watching her grow up and graduate from high school.
That was as far as she could dream into the future.
Even before birth on Jan. 21, 1997, Bailey was diagnosed with hypoplastic left heart syndrome, a complex and rare congenital heart defect that leaves the left side of the heart critically underdeveloped.
At the time, physicians described HLHS as a condition that was “incompatible with life.”
Physicians first urged Roxanne to have an abortion. She refused, in part, because she was having twins and the other fetus didn’t have the defect. Then after birth, they urged her to practice “compassionate care”: to take Bailey home and care for her until she died, expected in two to four weeks.
Back in the days of AOL and dial-up connections, Roxanne took to the internet and found surgeons in Michigan and San Francisco who offered to do surgeries that were considered experimental.
Her physicians, including cardiologists, still advised against it, saying that it would be a “nightmare” and extremely expensive.
“I went for it anyway,” recalls Roxanne. “And it was a nightmare. ... Lots and lots of times I was told she wouldn’t make it through the night, but she did. She had a rough first three years. She fought hard to be here.”
By age 3, Bailey endured a lifetime of health challenges: four surgeries, including three open-heart surgeries that were considered experimental at the time, and one surgery to repair a perforation in her bile duct, not to mention chicken pox.
Medical bills for the surgeries tallied more than $1 million but between military medical insurance and the teaching hospital forgiving the remaining debt, Roxanne didn’t face the massive bills that saddle so many Americans today.
And in the spring of 2015, Roxanne’s dream of watching her twins, Bailey and Joshua, walk across the stage to accept their high school diplomas became reality. The twins graduated from Wando High School.
“For me, that was a big release,” recalls Roxanne. “Her graduation was as far as I had wished for because the whole time I was waiting for the other shoe to drop. So I was like, ‘Wait a second, we’re here. We did it.’ ”
For Bailey, she didn’t really start to embrace her fortune until she was a junior in high school and started thinking about what she wanted to do in life. She decided she wanted to study to go into pediatric cardiology, and, in the process started reaching out to other survivors.
“I want to help kids who were just like me,” says Bailey, who is taking care of prerequisite classes at Trident Technical College and working as a certified nursing assistant at Franke at Seaside in Mount Pleasant.
And on Saturday, Roxanne and Bailey will join nearly 5,000 survivors and loved ones in their first-ever American Heart Association Lowcountry Heart Walk.
According to local Heart Association spokeswoman Kelly Lynn Bedtelyon, the AHA is funding more than $5 million in research to South Carolina institutions.
Bedtelyon adds, “Last year, there were six research awards in South Carolina worth over $750,000 that the American Heart Association thought was valuable research, but we did not have the funding to support them.”
Roxanne says Bailey is the reason they are doing it, adding that after enduring the trials and tribulations of those first few years, she wanted to move on from “the heart world.”
Though she knows she may need heart transplant surgery in the future, Bailey is focused on her future, which includes a passion for figure skating.
“When I was younger, I worried about it (her heart) a lot,” she said. “I had major anxiety, but I don’t know what made me overcome that. I accepted it. I don’t really think about it too much anymore.”
Reach David Quick at 937-5516.