Ashley and Gabe should have been over the moon with excitement. The new parents should have felt only joy and hope at seeing the image of their baby’s tiny face, feet and hands for the first time. Instead, they were heartbroken to learn their precious baby would face months, perhaps years, of hospital visits and surgeries.
Ashley immediately blamed herself. She says, “I was scared and upset about what I did to cause this, or what I could have done to prevent it. It was so hard.”
Baby Levi was suffering from a relatively rare birth defect—a bilateral cleft lip. This means he has two splits in his lip instead of the more common single split. A cleft lip happens when the tissue that makes up the top lip does not join entirely before birth.
The frightened parents immediate met with the cleft lip and palate team at ACH. It was then they learned Levi’s birth defect wasn’t Ashley’s fault at all—it sometimes just happens.
“The cleft team talked to us about all the possibilities that could be going on with Levi,” says Ashley. “We didn’t know if the palate was affected, and wouldn’t know until he was born.”
Cleft lip and palate is a common birth defect, occurring once in about every 600 births. A cleft is an opening that results when the two sides of the upper lip or palate don’t grow together during the early weeks of pregnancy. Without proper medical care, infants with this type of birth defect will have lifelong challenges.
Since 1978, almost all children born in Arkansas with cleft lip and/or palate have been treated at Arkansas Children’s. Because of generous donors, the Cleft Lip and Palate Program at Arkansas Children’s offers comprehensive, coordinated care to children with clefts from the time of birth until services are no longer needed—usually into the teen years, and sometimes, even into adulthood.
Unsure of what the future held for their sweet baby, the couple waited anxiously for his arrival. In August 2018, Levi was born a healthy, bouncing baby boy—in spite of his birth defect. Thankfully, his palate was not affected.
A week later, he visited ACH with his parents for the first time. Ashley and Gabe met with Levi’s care team to figure out exactly what they were going to do to correct his cleft lip and come up with a plan for surgery.
“The team is amazing,” says Ashley. “They’re very reassuring and make you feel as comfortable as you can about what’s going on with your child…especially when it requires surgery.”
It turns out, Levi was a perfect candidate for ACH’s NAM program. NAM, or nasoalveolar molding, is a pre-surgical treatment that uses an “appliance,” to mold the patient’s mouth and nose tissue, preparing them for surgery.
“NAM does not replace surgery,” explains Larry Hartzell, MD, Medical Director of the Cleft Lip and Palate Program at Arkansas Children’s. “It’s a preparatory process in a category called pre-surgical orthopedics. We manipulate the tissue and get it into a better position so surgery will be more successful. Not all babies with clefts are candidates for NAM, but for those that are, the device can greatly help narrow the cleft and improve nasal shape.”
Levi is a beautiful, blue-eyed, happy little guy. His bulky, uncomfortable appliance covered up his sweet smile since he was two weeks old. In February, the expert surgical team at ACH reshaped his nose and repaired his lip. He’s healing at home now, with his mom and dad. Eventually, all he will have to remember his cleft lip will be a small scar.
When little Levi was born with a cleft, his parents turned to the experts at Arkansas Children's Cleft Lip and Palate program for care. The treatment plan required a lot of time and commitment, but Levi's whole family was ready. Watch his medical journey and learn how you can help champion children like Levi.
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