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.
The Cleft Lip and Palate Program at Arkansas Children's Hospital incorporates an interdisciplinary team, with each member specializing in pediatric care.
The otolaryngology team at Arkansas Children's provides comprehensive Ear, Nose and Throat care, including treatment for congenital anomalies and plastic and reconstructive surgery.
The Voice Clinic at Arkansas Children's incorporates a multidisciplinary team, with each member specializing in pediatric care.
The Arkansas Children’s Aerodigestive Program constructed a multidisciplinary program that specializes in the diagnosis and surgical management of pediatric upper aerodigestive problems.
The Thyroid Center at Arkansas Children’s Hospital provides assessment from infants to young adults with thyroid nodules, thyroid cancer, hyperthyroidism, and hypothyroidism.
Our craniofacial, cleft and pediatric plastic surgery specialists at Arkansas Children’s are skilled in the surgical treatment of a range of congenital or acquired craniofacial conditions or issues for children of any age.
Craniofacial Orthodontics. The craniofacial clinic offers comprehensive orthodontic services for patients with craniofacial and/or cleft lip/palate malformations.
It is common for a newborn or infant to have an uneven or misshapen head. Learn about the signs and symptoms of craniosynostosis and how Arkansas Children's can help your child.
Snoring is often considered an adult issue, but it can indicate an underlying condition in children. Arkansas Children's specializes in seeing patients that are newborn to 18 years of age for this issue.
A special case calls for a special place. For 4-year-old Lyric Hammons and her family, that special place is Arkansas Children's.
Arkansas Children's successfully treats Bella Vista patient, Jaxon, for cleft lip and palate.
Meet Michael, an ambassador at Arkansas Children's. Michael has Down Syndrome and is a patient at our clinics. Get to know Michael and see how his family supports our mission.
Just An Extra Chromosome: Your Support Helps Gabriel Receive Care Close to Home at ACNW
Levi's mom, Ashley, details her son's story and his journey from cleft diagnosis to surgery.
Meet the Champion: Dr. Larry Hartzell, holder of the Benjamin and Milton Waner, M.D. Endowed Chair in Pediatric Facial Plastic and Reconstructive Surgery.
Traveling from Ukraine to Little Rock, Anna and her father seek treatment from the world-renowned Vascular Anomalies Center at Arkansas Children's Hospital with the hope of making Anna better today and healthier tomorrow.