Aliah Robinson was born Aug. 22, 2005, with bilateral cleft lip and palate, the most common birth defect in the U.S. Early in pregnancy, the tissues of a baby’s developing upper jaw, nose and mouth normally come together to form the roof of the mouth and upper lip, but if this doesn't happen properly, a baby could be born with a cleft lip, cleft palate or both.
While today’s advances in ultrasounds have made detection of cleft lip and palate easier, at that time, Aliah’s parents didn’t know about her condition and faced many unexpected challenges, fear and uncertainty. Thankfully, within a few days, Aliah was seen by Bruce Horswell, MD, DDS, FACS, pediatric maxillofacial surgeon, and became one of the hundreds of children and families helped by the CAMC Cleft and Craniofacial Center.
“Dr. Horswell was a breath of fresh air,” said Tracy Robinson, Aliah’s mom. “We didn’t know anything about cleft lip and palate, and he has helped us through all of it. He’s been very patient and kind through the whole process. We’ve been very grateful to have him as our doctor.”
Since she was born, Aliah has undergone several procedures to reconstruct her palate, nose, upper jaw and teeth. Through it all, her parents marvel at her strength and bravery. “Watching how she deals with all of this in her life is difficult sometimes for us as parents, but we couldn’t be more proud of Aliah,” Robinson said.
When Aliah was about 10 years old, she had the opportunity to meet Kacie Strother, who was crowned Miss Northern West Virginia’s Outstanding Teen. Strother was born with a cleft lip and had overcome years of bullying and went on to be a pageant winner. It was during their first meeting that Strother gave Aliah a book about cleft lip that comforted and inspired her so much, Aliah decided to write a book of her own.
“Let your Scar Shine” was the fruit of her labor. It tells the story of Marshmallow, a bear who has surgery to correct her cleft lip and palate. After Marshmallow leaves the hospital, she is excited to show her new scar to her best friend, Hershey, who is also going to have cleft repair surgery. Marshmallow shares her experience to comfort her friend’s fears. Soon, both Marshmallow and Hershey are back to playing outside – with matching, shiny new scars. Aliah hopes her book will reassure other children born with facial differences and help them stay brave throughout their treatment.
Treatment of cleft lip and palate can be challenging and complicated. Because the condition often affects a child’s speech, hearing, jaws, teeth and overall facial development, treatment needs to be staged and coordinated between many specialists.
The Cleft and Craniofacial team at CAMC is comprised of multiple specialists, including oral maxillofacial surgeons, developmental pediatricians, ENT physicians, pediatric dentists, orthodontists, geneticists, speech pathologists, pediatric dietitians and social workers. The team works together to provide comprehensive, multidisciplinary care to patients.
“A surgeon can be trained in cleft lip and palate surgery, but if you don’t have a team that’s dedicated to taking care of these children with cleft lip and palate, aspects of their care can be dropped or forgotten,” said Paul Kloostra, MD, DDS, director of the CAMC Cleft and Craniofacial Center. “It can be difficult to coordinate care for one other specialist, let alone having three, four or five specialists involved, and you don’t have someone making sure that communication is getting out to everybody and things are appropriately coordinated.”
The team approach to care from birth throughout a child’s developing years, combined with meeting stringent national criteria, is why CAMC’s Cleft and Craniofacial Center was the first cleft/craniofacial program in West Virginia accredited by the American Cleft Palate-Craniofacial Association, placing it among the major institutions in America that meet the highest standard of care for these conditions.
“It’s really nice to see all the doctors together at once so they can collaborate with each other,” Robinson said. “It makes it really easy on the parents.”
“It’s so important for children to know that there are other children just like them with this particular ‘badge of honor,’ as we sometimes call it,” Horswell said. “They know they have it; they know it’s life-long. But when you can share your concerns and fears, even if they aren’t totally answered or predictable, and to know that you’re not alone makes all the difference.”
Learn more about the CAMC Cleft and Craniofacial Center at camc.org/Cleft.