From One Parent to Another: A Mother's Experience With Cleft Lip and Palate

Barbie went through a lot to conceive her twin boys. After two years and three miscarriages while attempting to conceive naturally, she decided to try in vitro fertilization. While undergoing that daunting process, the South Carolina resident stuck to every rule, eschewing alcohol (not even a sip) and caffeine (including chocolate!) to ensure their health. She ate a strict diet, took a special folic acid pill and did everything by the book.

So, when Barbie went in for her 20-week ultrasound and the sonographer detected cleft lip and cleft palate to varying degrees of severity in both boys, she was shocked and confused. The staffer offered no further explanation or assurance about their condition. Instead, she handed Barbie literature about possibly terminating her pregnancy because of the boys’ condition. Her heart sank.

“Why would I want to abort my babies because of this?” she recalls thinking. “It really freaked me out. What exactly is this? What do they have? Is it more than just something on their face? It was so scary because that information was not given to me like it should have been. I worked hard to have those babies. I was not going to terminate my pregnancy, and, for that to even be an option, I was very surprised. It was a very scary time.”

After Ty and Colton were born in 2010, the family’s local pediatrician referred them to a hospital in Atlanta for treatment (they were living in Georgia at the time), but Barbie wasn’t sure it was the right choice. Luckily, things took a turn while the boys were in the NICU. Or, as she wrote in a social media post: "A beacon of hope appeared."

Barbie’s friend’s husband, Chris Oglesbee, heard about the boys’ condition – and he just happened to be a Shriner, a noble of Alee Shriners in Savannah. He convinced Barbie and her husband, Rod, that the twins needed specialty pediatric treatment and that Shriners Children’s could provide it. “He guided us through the paperwork and extended his unwavering support,” Barbie wrote. “Since then, the Shriners have been our steadfast allies, providing crucial help every step of the way.”

The boys are now 15 and have undergone several surgeries (with more to come) at Shriners Children’s Ohio, in Dayton. Although it’s a nearly 11-hour drive from their home, the family agrees that the journey is well worth it. Today, Ty and Colton are doing great. Both athletes with a passion for baseball, they happily attended a Cincinnati Reds game, courtesy of Shriners Children’s, and met their idol, Elly De La Cruz. They also proudly served as Patient Ambassador standard-bearers at the Shriners Children’s Open in Las Vegas in 2024.

While Barbie had never even heard of the condition at the beginning of the twins' cleft lip and palate journey 15 years ago, she’s become a resource and support to other parents with children with cleft lip and palate, particularly through online groups.

Here, Barbie reflects on what she’s learned along the way – thanks in part to the guidance of Shriners Children’s physicians and staff – and what she wants to share with other parents new to the condition.