Two months ago, Max Gristina was tongue-tied — literally.
The Columbus toddler was born with several birth defects that affected his mouth, including a cleft lip and palate. Max’s tongue-tie made it difficult for him to move his tongue properly, which impeded his feeding and speech.
Today, the 19-month-old toddler no longer faces those conditions — thanks to the physicians at Children’s Healthcare of Atlanta at Scottish Rite. He underwent surgery to repair the defects at the children’s hospital in October.
“He’s at the perfect age to take off, learn how to speak and not be impeded by anything,” said mother Joanne Gristina.
Max was born May 5, 2008, to Joanne and husband Thomas Gristina, an attorney at Page, Scrantom, Sprouse, Tucker & Ford in Columbus. He is the couple’s third child after daughters Lily, 6, and Annabelle, 4.
Shortly after Max was born, Thomas remembers noticing a crease in Max’s lip and asking doctors about it. Max’s pediatrician, Dr. Kathryn Cheek, told the Gristinas it was indeed a minor cleft lip. She suggested they wait to see if it developed into anything that required surgery — perhaps a cleft lip and palate, which is treatable.
A cleft is an opening or split, which can occur in the lip and palate, or roof of the mouth. It occurs when mouth tissue doesn’t develop and join completely before birth. Cleft lip and palate are among the most common birth defects and affect about 1 in 700 newborns in the U.S. every year, according to the Mayo Clinic.
Babies and children who are affected can experience feeding and speech difficulties, as well as dental problems and frequent ear infections. The causes are not clear, but some studies suggest genes and environmental factors may play a role, according the March of Dimes.Difficult wait
Max’s father said waiting to see if his son’s lip crease would develop was difficult. The family had noticed other oral defects as well: Max’s uvula, the small ball-like tissue that dangles above the back of the tongue, was split into two. Also, the membrane connecting the bottom of his tongue to the bottom of his mouth extended to the tip of Max’s tongue. The latter was responsible for Max’s tongue-tie — which occurs more frequently in babies with oral birth defects like cleft lip and palate.
In Max’s first few months, he also experienced some regurgitation of his food through his nose — another common symptom of the condition.
Thomas wanted answers, but he knew he couldn’t get them until Max was a bit older. If Max indeed had a cleft palate, he would have to wait until he was at least 1 ½ to undergo an operation, Thomas said.
“It’s frustrating, but I knew I did the right thing for him,” he said.
During Max’s annual checkup in August, Cheek referred the Gristinas to a pediatric-trained surgeon at Children’s Healthcare of Atlanta. It was Dr. Fernando Burstein, a pediatric plastic surgeon, who told the couple Max indeed had cleft lip and palate and would have to undergo surgery under sedation if they wanted it repaired.
If left untreated, Max’s nose could have grown crooked and flat, Thomas said. Also, “if his tongue had not been released, he would not have been able to speak correctly,” Joanne added.
Little Max went in for surgery on Oct. 22. The couple said it was a very nerve-wracking experience.
“That was the worst part,” Thomas said.
“It was very stressful,” Joanne added.
The Gristinas agreed to have Max undergo other procedures to correct additional birth defects. During the 2½-hour operation, an ear, nose and throat surgeon inserted ear tubes into Max’s ears to prevent future speech problems. A urologist also repaired an issue with Max’s circumcision. Finally, Dr. Burstein fixed Max’s cleft lip and palate.
Max went through recovery for about two weeks. The toddler is still adjusting today; mom Joanne said she sometimes sees him sticking out his tongue and experimenting with new sounds.
“It’s all new sensations for him,” she said. “He makes new sounds and I think he’s catching up to where he should be.”
Max and the family will pay another visit to Children’s Healthcare of Atlanta next year to see if he will have to undergo speech therapy.
The couple said they feel lucky they were able to get the referral for Max to get treated at Children’s Healthcare of Atlanta, which offers more than 30 pediatric specialties.
Thomas said he hopes their experience will inspire other parents to get their children checked out if they suspect any medical problems.
“As a parent, you have to ask questions,” he said. “You need to be assertive for your child.”
He also hopes the community realizes there are specialty resources available — and local doctors can make those referrals.
“(Children’s Healthcare) is up there in Atlanta and all they do is treat children, and Columbus has strong ties to that hospital,” he said.
As for Max, Thomas said he is just fine after such a big surgery on a little boy. He hasn’t been able to form words just yet, but the Gristinas feel he is on track to do so.
“He’s a very happy, adventurous boy,” Thomas said. “He’s unfazed by this whole thing. … I’m grateful for that.”