Luis Villanueva has just finished second grade.
He’s seven years old, a math whiz, and his interests are typical for a boy his age.
If it’s not Star Wars, it’s Spiderman or soccer, and we spend a good amount of time playing video games. His mother, Sulma, watches proudly. Luis is not shy. Not afraid of the camera snapping away at him. For Luis, the cleft lip is a faint scar and a long-ago memory.
“I can’t remember everything,” Luis says of his surgeries. Thanks to follow-up care, however, he does remember Dr. Hugo St. Hilaire. “He was cool. I liked him,” Luis says. “He was one of my first doctors. He’s got funny ears.”
His father’s memories are much more vivid. In March of 2008, the Villanueva’s received a pre-natal diagnosis. “It was a surprise of course and I felt bad at first,” Luis, Sr. recalls. “The doctors told my wife that he was going to have Down syndrome and that he would have heart and kidney problems. Thank God none of that happened.”
“Cleft lip and palate, that is something you can have repaired,” he says.
Finding a Certified Cleft Palate Team
After Luis was born, his pediatrician referred him to the Cleft Palate Team at the Children’s Hospital of New Orleans. There, he met Dr. St. Hilaire, who performed the first of four surgeries when Luis was just six weeks old.
Importantly, the Cleft Palate Team at Children’s Hospital is certified by the American Cleft Palate – Craniofacial Association to treat cleft lip and palate, observing the highest standards in every facet of care.
Looking back, Luis, Senior remembers the emotions of those first weeks.
“At first it was kind of hard because he was always crying, but after he had the first surgery to close lip it was just like having a normal baby.” Luis pauses, clearly moved, “It made a big impact when I saw him without the cleft…”
Cleft Palate and Your Child’s Development
If there is one thing you notice after spending an afternoon with Luis, Junior, it’s that his birth condition hasn’t much affected his childhood.
He’s a talented kid. At one point during our time together, he heads for the piano and plays a few songs for us (the Imperial March from Star Wars among them). He is very polite. Articulate in translating for his mother, who speaks very little English.
He is proud of his Honduran heritage and of his father, Luis Sr., who works in construction. His favorite dinner (just for the record) is a baleada, a traditional Honduran dish composed of a flour tortilla filled with mashed fried beans, cheese, and eggs.
Next for Luis is a alveolar bone graft—as his father says, “He still has a little gap in his gum”—and, now that his permanent teeth are coming in, he will need to wear braces, just like many other boys his age.
Reflecting on how far his boy has come, Luis, Senior says, “I just look at my son and he’s got that little scar, but if it weren’t for that it would be hard to tell.”
Advice for Parents of Children Born with Cleft Palate
When asked for advice for other families caring for an infant born with cleft lip and palate, Luis, Senior had this to say: “Even though it is hard news—as a parent you don’t want to see your kid go into a surgery room, you need to know that it is something you can work through.”
“There are a lot of options and a lot of doctors, but the most important thing is finding a cleft palate team you like and trust.”
“We are lucky that Dr. St. Hilaire is one of the best and based right here in New Orleans.”
“He is very confident. I appreciate the way Mary Ellen handled our appointments. She has helped us a lot. And everybody at Children’s Hospital just treated us as good as they could. They are great, and I am very thankful to them.”