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.

A Mother’s Words of Wisdom

It’s not your fault, Mom.

“You can't blame yourself. It's nothing you did. You just need to move forward and do everything you can for them now – mentally and emotionally. I try and make them strong, and I don’t try to hide it. I never made it a secret that they had CLP [cleft lip and palate].”

Arm yourself with knowledge.

“The biggest thing is you've got to do your research. You have to educate. You can't just bury your head in the sand and think it'll get better. You have to educate yourself because you are your child's biggest advocate. You've got to know what's going on. Never take what someone says and just go with it.”

Find your support system, near or far.

“Find your resources, and reach out to others, especially on Facebook. There are so many groups where I’ve started 15-year friendships with people. We've never met in person, but we would do anything for each other because we were there for each other when all of this happened. It’s like having someone there basically holding your hand across the United States.”

Cleft lip and palate isn’t just an aesthetic issue.

“Those groups really helped me learn all the different aspects of what's going on. It's not just a visual thing, and it's not a quick fix. It's not just: We're going to have surgery, and they're all better. There's speech therapy they have to go through. They will have difficulty eating at times. There's mental concerns. Some of the kids get depressed. They don't understand why they're different. So, it's not just one and done.”

Secondary surgery to retrieve new bone for a graft isn’t always necessary.

“Dr. Christopher Gordon used cadaver bone rather than taking it from their hips so they're not having to heal from their hip and from their mouth at the same time. The doctor is trying to cause them the least amount of trauma as possible.”

Rhinoplasty is often the last surgery needed once the child is a young adult.

“But they won't do that until they're fully formed. Boys need to be 17 or 18.”

It is possible to receive amazing care regardless of your family’s ability to pay or insurance status.

“When it comes to Shriners Children’s, you worry about how good could the doctors be if they're free. That’s just your automatic thought. But then I learned that the doctor the boys see, Dr. Christopher Gordon, is chief of plastic and reconstructive surgery in Dayton. So, he's not just some guy donating time or something. He's the best of the best. The Shriners are making sure that there is a high quality of care.”

Shriners Children’s doctors and staff do everything possible to make surgery more pleasant.

“Each time they come for surgery, they've gotten to pick out their scents – what they smell when being put to sleep. They spoil them rotten with little gifts and things. One of the things I really love is they put them under before they put in the IV so they don’t have to get stuck with the IV. And that is really important because my children have been other places for surgery and screaming when they put the IV in, and that’s just trauma. They try and keep things as trauma-free for the family and the children. It's the best of the best care. It’s so wonderful what they do for kids.”

Shriners Children’s ensures that you never feel alone.

“They treated us like royalty. When we came in, they were so kind and understanding. They knew we were going through a rough time, so, for the boys’ first surgery, they paired us with another family with a little boy who had gotten burned very badly as a child. We got to meet him and walk around with him. Just seeing his strength and knowing all the things he'd been through and how that family totally trusted Shriners Children’s to take care of everything meant a lot. Meeting and connecting with other families also made me think, “Hey, we ain't got it so bad.” When you look at some of the things the other children were going through, it was like, “We can get through this.”