PLAINFIELD, Ind. — July is National Cleft and Craniofacial Awareness Month, which affects thousands of babies every year.
For many families, the journey can be overwhelming and difficult.
“His nose was open with a big gap, and his palate is open all the way through,” Susan Thorp said.
For the last five months, the Thorp family has been navigating this new journey with their son, Isaiah, who was born with a cleft lip and palate.
Susan and her husband, Kyle, found out during their 20-week ultrasound. At the time, they had no idea what it meant or how many others were going through the same thing.
“We didn’t know how common it is to have a cleft,” Kyle said.
Each year, about 1 in every 600 babies in the U.S. are born with the condition. It’s when the roof of the mouth and lip become split and can affect feeding and speaking.
“Whoever we would have as a kid and whatever that child would look like, we would love, but I was like, 'My kid’s maybe not going to be beautiful, and he might not be handsome, and he might get made fun of,'” Susan said.
That worry quickly went away once Susan held Isaiah for the first time.
“Immediately all that fear was like…he’s perfect,” she said.
In June, Isaiah underwent his first surgery to help improve his lip. He will have another one in the winter to work on his soft palate.
Dr. Emma Cordes, a cleft and craniofacial surgeon with Riley Hospital for Children, said doctors try to repair the lip between three to six months of age and try to repair the palate around a year old.
“There are a variety of causes for this. Sometimes, it’s just a random anomaly, something that happens in the environment. Other times, it’s linked with a genetic condition that is linked to multiple other congenital anomalies as well,” Cordes said.
She said many patients will need surgeries and support throughout their childhood.
“It’s really a lifelong journey once you are diagnosed with a cleft. We continue to follow kids once they are 18 or beyond to really help them on their journey,” Cordes said. “My goal as a craniofacial surgeon is to make the outside look as normal as the inside, so they really feel like they are no different than any other kid, even if they were born with some facial differences.”
It’s a unique medical journey the Thorp family continues to navigate together.
“We are making sure we surround ourselves with people because a lot of people don’t have the support system that they need,” Susan said. “Our hope is that he knows nothing is wrong with him, you know, that he is just perfect the way he is.”