Cleft lip, palate surgery reaction: 'Amazing,' 'awesome'

Courtesy of SSM Cardinal Glennon Children's Medica
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"People can't believe she is the same baby," Alycia Goodrich says during her daughter's first postoperative visit to SSM Cardinal Glennon Children's Medical Center.

Sophia Goodrich was born with cleft lip and palate on Dec. 8, 2010. The clefts produced wide gaps in her upper lip, nose and roof of her mouth. "Her pediatrician recommended we go to Cardinal Glennon," her mom says. "That's where he sends all his patients for pediatric care."

Cleft lip and palate are birth defects that occur when a baby's lip and mouth do not form properly during fetal development. "The face develops in five sections," says Dr. Alexander Y. Lin, section chief of pediatric plastic surgery and director of the St. Louis Cleft-Craniofacial Center at SSM Cardinal Glennon. "If these do not fuse properly, the child ends up with a cleft. This is usually a random event that is not genetic. Children with clefts are usually normal other than the cleft itself." The U.S. Centers for Disease Control lists cleft lip and palate as the most common congenital defect, affecting about one in 600 births.

Because cleft lip and palate have an array of effects, the cleft team at SSM Cardinal Glennon includes members from plastic surgery, speech therapy, orthodontics, audiology and ear-nose-throat, and occupational therapy. The clefts cause problems with appearance, feeding, dental growth and language. When the palate has a cleft, air that is supposed to be produced by the mouth escapes through the cleft palate into the nose, creating nasal, airy sounds that are difficult to understand. Affected children also may be prone to ear infections and hearing loss.

"Children with uncorrected clefts would look unusual and their speech would be almost unintelligible," Lin continues.

Alycia and husband Robert began visiting Cardinal Glennon Children's Medical Center early last year from their home in Strasburg, a village in south central Illinois. They were comforted by Lin, team members of the St. Louis Cleft-Craniofacial Center and parents of other children undergoing cleft surgeries.

During Sophia's third hospitalization, her family was visited at SSM Cardinal Glennon by Matt Holliday, St. Louis Cardinals left fielder -- a nice surprise.

"I do more than one cleft surgery every week, totaling more than 100 cleft-craniofacial surgeries last year," Lin said. "Combined with all our clinic patients, that means there is at least one child with a cleft who walks through our doors every day. Many people don't realize how common cleft lip and palate are in the United States."

Cardinal Glennon Children's Foundation donors provide ongoing financial assistance to help cover the costs of cleft lip and palate care for patients whose families do not have sufficient resources. The Foundation is seeking funding for the St. Louis Cleft-Craniofacial Center at SSM Cardinal Glennon to add a permanent orthodontist to its team as current orthodontists are available on a volunteer basis only a few days per month. "The jaw tilts in towards the cleft, skewing the teeth severely. This requires specialized orthodontics to restore a normal conversational smile, which is essential for chewing and communication," Lin says.

Sophia underwent three operations in her first year. One reduced the gap in her lip and nose. The realigned tissues were given time to grow, then a second operation reconstructed her cleft lip and nose. Surgery to repair the cleft palate was delayed until she was 1 year old, about the usual age of speech development.

Sophia's facial reconstruction was completed before she would have memories of her initial appearance and before she would enter the busiest period of speech development. Sophia started her second year as a very beautiful little girl.

"Plastic surgery on kids is difficult, partly because their tissues are rapidly growing and changing shape, and many kids will require small revisions," Lin says. "The goal is that, by the time she gets to school, few people will be able to tell that she ever looked different. Scars never completely disappear but fade a little each year."

"The surgeries went really well," Sophia's mother says. "Her doctors were amazing. Her nurses were awesome."

Like most kids with clefts, Sophia will require plastic surgery to bone graft her upper jaw and gums, and will need orthodontics as early as age 6 onwards.

"She has a tiny scar but as she gets older that will fade," her dad says.

Information for this story was provided by SSM Cardinal Glennon Children's Medical Center.

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