Audrey Strike is an attractive 19-year-old sophomore at Drake University in Des Moines. She’s studying pharmacy and recently joined the Alpha Delta Pi sorority. She has many friends she grew up with in Iowa City, and is excited about making more while at college. She talks with a smile in her voice. Audrey wasn’t always so confident. She was born with both a cleft palate and cleft lip – birth defects in which the palate, or roof of the mouth, and the upper lip don’t fuse together.
At just a few months old, Audrey had the first of what would become several surgeries over the next 18 years at University of Iowa Children’s Hospital. The Cleft Palate and Craniofacial Center at UI Hospitals and Clinics is the only center in the state with a fellowship-trained craniofacial surgeon and a fellowship-trained pediatric otolaryngologist serving as co-directors. Bradley Coots, MD, and Deborah Kacmarynski, MD, lead the center and bring with them extensive training and experience in cleft care.
While Audrey’s condition may seem extreme, it’s not uncommon. Approximately one in every 1000 babies born in the United States is affected by either a cleft lip or a cleft palate, or both, making the condition the most common birth defect in the country. There’s no real known cause for the defect, but researchers believe it can be caused by both genetics and environmental factors. Although the condition appears to affect a small part of the child’s face, cleft lip and cleft palate can and often do have wider-reaching implications – in the course of their adolescence children will likely have several surgeries and need orthodontic and dental care, speech therapy, and facial reconstruction. Many will experience some type of hearing disorder or loss.
The challenges may seem insurmountable, but they’re not, doctors say. Because the defect occurs early in pregnancy, doctors are able to detect the issue and begin talking with the parents before the infant is born. “We want to assess the patient as early as possible,” says Coots. “Ideally we’re notified of the cleft before the baby is born and we can begin talking with parents right away. It helps address their anxieties and answer their questions early on.”
“Once the baby is born, the parents then know what to expect,” Coots says.
Among the things to expect, Coots says, are surgeries, regular hearing checks, speech therapy and dental and orthodontic care. For a cleft lip, the first surgery to repair the cleft is done when the baby is 3 to 6 months old. If it’s just the lip, Coots says, that may be the only surgery needed, with the possible exception of revision surgery when the patient is older, about 4 or 5 years old.
“If you add the cleft palate in there, it becomes more complex,” he says.
In that instance, Coots says, the palate area is repaired at about 12 to 14 months. That surgery is just the beginning of a series of procedures and therapies that need to be considered.
Kacmarynski said in most cases children with a cleft palate require further jaw surgery and manipulation, orthodontics, speech therapy, and sometimes develop hearing issues and concerns. “Some of these kids need to have their jaw broken, pulled forward and replated,” Kacmarynski says.
That was the case for Audrey Strike. Having been born with both a cleft lip and a cleft palate, Audrey has had a series of operations beginning with cleft lip and palate repair as an infant. In grade school she had an alveolar bone graft-a procedure where small pieces of bone from the hip are placed into the upper gum line to give permanent teeth a better foundation to erupt into.
It wasn’t easy, she says, but her parents and a great group of friends and family helped her get through. She has recollections of many of the later surgeries but the reactions of her classmates, as well as people she didn’t even know, stand out more prominently in her memory. The kids weren’t really openly mean, you just got the feeling that you were different in a room full of kids,” Audrey says. “Some people would just stare or make comments to their friends; you could tell you weren’t the same in their minds. They were curious, but not always sure how to approach me or ask questions about my appearance.” The summer between her sophomore and junior years of high school was among the hardest. Needing to have her jaw moved forward, Audrey had to wear an apparatus that was screwed to her head for three months – something she said drew curious looks and stares from strangers. The following summer a nose surgery (septorhinoplasty) was performed to help her breathe better and to improve on the overall appearance.
Little by little her appearance changed, and so did her attitude about both herself and her surgeries. Each surgery had its challenges, she says, but the overall the benefits outweighed them. She didn’t let the surgeries and therapies stop her from playing the piano, twirling baton, singing with both the school and church, and volunteering in the community.
“I’ve thought of it more as a gift because I could use it as a way to grow, in a ‘what doesn’t kill you makes you stronger’ kind of way,” she says. “I saw it as a way of making me a stronger person because of what I’d gone through. I can appreciate the differences in people more.”
For more information review our online information , call UI Children’s Hospital at 888-573-5437 and ask for the UI Cleft Palate clinic, or call the clinic at (319) 356-2168.
0 comments:
Post a Comment