As they anxiously awaited the results of an 18-week ultrasound, Bonnie and Adam knew something wasn’t right. “We have a 4-year-old, Michael, and I never remembered having to wait after an ultrasound,” says Bonnie. “The longer we waited, the more I started panicking.” Sure enough, their suspicions were confirmed. The technician told the new parents that their baby, Aiden, would most likely have a cleft lip and cleft palate.
“My first thought was, ‘What did I do wrong? What did I do to cause this?’” remembers Bonnie. The technician reassured Bonnie, and explained that while cleft lip and palate are two of the most common birth defects, there isn’t any conclusive evidence that points to why or how they happen. “Because we didn’t have any of the facts, we thought this news was devastating,” she says.
Devastation quickly turned into determination when Bonnie and Adam were referred to the Boston Children’s Cleft Lip and Palate Program to meet with Dr. Carolyn Rogers-Vizena. She devised an action plan for three consecutive surgeries. “We were amazed from the very first meeting, when Dr. Rogers-Vizena explained exactly when and why everything was going to happen. It made us feel reassured,” says Bonnie.
However, Bonnie and Adam continued to struggle with lingering anxiety over their son’s future. “I didn’t want him to have to explain what was ‘wrong’ with his face to anybody,” says Bonnie. To help ease their worries, the hospital gave Bonnie and Adam a support contact, a family experienced with the post-surgical outcome and process, but they decided not to call. “I didn’t want to call because I was afraid of what I might learn,” Bonnie says.
When Aiden was born on May 22, 2017, his care team was ready with a plan. During Aiden’s first surgery at 3 months old, an oral surgeon inserted an orthodontic appliance called a Latham device. The device pulled Aiden’s palettes together to reduce the pull on his lip in preparation for his next surgery. One month later, Rogers-Vizena took out the dental device and surgically corrected Aiden’s cleft lip. During Aiden’s third surgery at 10 months old, she went back in to correct the cleft palate. With the surgeries done, the worst was now behind them.
Moving forward, Rogers-Vizena and Aiden’s pediatric dentist will keep an eye on his development. “After the surgeries, our main concern was that Aiden get enough nutrition. It was a big relief when he took right to eating out of the specialized bottle,” says Bonnie. “It also looks like he has a full set of teeth in the front, and he’s already making the ‘g’ and ‘b’ sounds, which kids with his condition can struggle with,” she says. When Aiden is 9 years old, he will likely need a bone graft to put bone into his palate, but from there on out, it’s all cosmetic.
“You think birth defects aren’t that common, but I feel like almost everyone we talk to about Aiden knows someone who’s been through it,” says Bonnie. “Looking back, I really regret not contacting the support family. I wish I had read more and did more research. Aiden turned out fine; they all turn out fine. It’s not as big of a deal as we thought it was going to be.”
Aiden is doing more than fine. “His personality is really starting to grow. He’s crazy. He’s a ham. He already has a sense of humor and tries to make us laugh,” says Bonnie. “And he’s already tougher than our 4-year-old!”
Learn more about the Cleft and Craniofacial Center.