When Rick and Aimee Bellew learned that their second child Brooks would be born with a cleft lip and soft palate, they weren’t sure what to expect. So like most people looking for information, they took their questions to the Internet—which turned out to be a mistake.
“Just minutes into our first cleft lip search on Google and we were already devastated,” Aimee remembers. “The pictures staring back at us from the computer screen were so severe. We thought ‘there’s no way a child with a condition this serious looking can be otherwise healthy.’ It was very overwhelming.”
In the coming weeks, they met with doctors and specialists for further testing, and everything indicated that—aside from Brooks’s cleft—he was developing like any other healthy baby. And while the Bellews’ local care team gave them good news, they didn’t have the information on cleft lip repair that the family was looking for.
Dominic Gundrum’s smile is truly special. Or, more accurately, there’s something really special about his smiles. They light up a room, even though they’re the result of a rare and extremely difficult to correct birth defect. Still, despite how atypical they seem at first, Dominic’s giggling smiles are surprisingly disarming.
To have something look so different—but still spread such joy—is truly unique. And, in a way, that uniqueness defines Dominic perfectly.
An uncertain beginning
During a routine 20-week ultrasound in their home state of Wisconsin, Dominic’s parents, Mark and Mary, were excited to find out if they were having a boy or girl. But when doctors looked at Mary’s grainy ultrasound they discovered more than Dominic’s sex. Though it was hard to tell for sure, the ultrasound image showed that Dominic’s skull hadn’t fused together properly early in the pregnancy, leaving a large, triangle-shaped gap running from his upper lip through the middle of his nose and forehead—a condition known in the medical world as a Tessier midline facial cleft.
But the cleft wasn’t the only issue Dominic was facing: some fluid and tissue from his brain, normally encased in the skull, had seeped outwards through the cleft, forming a golf ball-sized bubble underneath the skin of his forehead. (A condition called an encephalocele.)
One of the hardest things to hear when you are pregnant is that there is something wrong with your baby.
When he finished the ultrasound, he said he’d back in a minute to talk about “some things.” I’ll never forget the way my heart dropped out of my chest at that moment.
For Meera Oliva, learning that her son, Elan, would be born with a cleft lip and palate was devastating.
I could barely speak. All that came out was crying. I tried to pull it together enough to just get out the words “cleft lip.”
On The New York Times’Motherlode blog, Meera shares her story, from learning about cleft lip and palate to all the surgeries – performed by Children’s John Mulliken, MD – Elan, has had to “cure” his cleft lip.