Khyre's Story — Cleft Lip and Palate
Connecticut Children’s multidisciplinary approach to caring makes a big difference in the lives of patients and families treated by the craniofacial team.
One such patient is 8-year-old Khyre Morris of Simsbury who was born with a bilateral cleft lip and palate. Since birth, Khyre has undergone five surgical procedures. According to his mother Rhashita Brown, the cleft lip and palate was detected in an ultrasound that took place before he was born in July 2003. Despite the overwhelming news, Brown said her worries were immediately eased by the craniofacial team.
“He’s had the same team from the beginning and they’ve always been there for us,” said Brown. “They’re wonderful people who in addition to the surgeries have taught Khyre how to eat and how to talk.”
Brown said that she was told that her son was one of the most serious cases that the surgeons had ever seen. Bilateral cleft lip and palate is a birth defect in which there is an opening on both sides of the lip and roof of the mouth. This is caused by incomplete development during early fetal formation.
From four months to six years old, Khyre received most of his nutrition through a feeding tube. During this time, Brown, who works as a mortgage closer, was transferred to Georgia in 2007. While living there, Khyre had to undergo a procedure to reseal an opening in his palate. Following the procedure, Brown said that she missed the attention provided to Khyre by the Connecticut Children’s craniofacial team, and they returned to Connecticut in 2008.
The craniofacial team is led by Charles Castiglione, MD, and Paul Kanev, MD, both medical directors at Connecticut Children’s, along with Virginia McGoey- Radshaw, MEd, CCC-SLP. The team provides multidisciplinary specialty care for children with congenital defects of the head and neck. According to Dr. Castiglione, cleft lip or palate is one of the most common birth defects in the country, affecting every one in every 750 births. The Connecticut Children’s craniofacial team treats about 600 children a year.
“Whenever a parent finds out that their baby has a craniofacial anomaly, it’s devastating news,” said Dr. Castiglione. “As soon as we get the call about a child—whether it’s through an ultrasound or birth—our team takes immediate action to go meet the parents for support and to start the planning.”
Dr. Castiglione added that the craniofacial team includes a wide range of specialists including plastic surgeons, oralmaxillofacial surgeons, neurosurgeons, orthodontists, developmental pediatricians, dentists, otolaryngologists, speech-language pathologists, social workers and nurses. Team members collectively see craniofacial patients twice a month during clinic. Since Connecticut Children’s opened in 1996, some of the team members—including Richard Bevilacqua, DMD, MD, Elene-Lee Ritoli, DMD and Ira Greene, DDS—actually donate their time for the clinic.
“Everyone on the team pitches in because these children are very special to us,” said Kerri Langevin, MSN, APRN, PNP-BC, who serves as the pediatric nurse practitioner for the craniofacial team. “I think all of us get as much from the patients as they get from the team.”
It’s that dedication that prompted Brown to move back to Connecticut and continue Khyre’s care at Connecticut Children’s. “They are so accessible and make you feel that your child is the only child in the world,” Brown said. “I can call them anytime and they help ease the frustrations that we sometimes encounter. Khyre also is seen in cardiology, gastroenterology and neurology and the team has helped us with those appointments.”
Because Khyre’s lips don’t meet, his soft spoken speech isn’t always that clear. “Because of that, I’m his mouthpiece,” Brown said. “But other than that, he is pretty much a normal 8-year-old.”
Today, Khyre is an active third-grader who takes karate lessons and loves playing video games on his X-Box. “My favorite game is ‘Cars 2,’” he said with a wide grin.
For parents whose newborn has a craniofacial anomaly, Brown suggests that they stay positive and that with the support of the craniofacial team, they can be optimistic that everything will work out. She also stressed that parents advocate for their child especially with school.
Langevin said that the multidisciplinary approach the craniofacial team takes is seamless, especially with the clinics which eliminate the need for parents to bring their child to multiple appointments. This model is rare and is not available at other craniofacial programs in the region. Langevin knows Khyre and his mother well, and said that he has made tremendous progress over the years.
“Khyre was always a happy child, and he has done so well with his self-esteem. I think that has to do with his mother,” Langevin said.