When asked what she wants to be when she grows up, Alexis has a ready answer: doctor, lawyer, teacher and dolphin trainer. While that may seem like a lot of goals, nothing is too much for this outgoing girl. The reigning Homecoming Princess cheers for the Murray Park football team, is on the honor roll every year and plays soccer and basketball. One would never guess that the beautiful 9-year-old was born with a condition requiring six surgeries to repair.
A Mother’s Determination
One of the many children with craniofacial anomalies who are helped by the Craniofacial Center at Nicklaus Children's Hospital, formerly Miami Children's Hospital, Alexis was born with a bilateral cleft lip and cleft palate, meaning parts of her lip and the roof of her mouth did not join properly during fetal development. There is no known cause for this condition and, in most cases, it happens without warning.
“My pregnancy went like clockwork. Nothing was suspected,” says her mother, Helena, MEd, RT (R), a Clinical Process Educator at a local hospital. “But when they wouldn’t let me see her, I knew something was wrong.”
Although Helena was assured the condition was correctable, the words did not reassure Alexis’ father, who abandoned the family. Broke and alone with two children, Helena faced the future with courage and determination.
“Many babies born with cleft lips and palates have problems feeding,” says Helena. “With the nurses’ and physicians’ help, I learned to maneuver Alexis’ bottle up and down to feed her.”
Alexis went home just five days later.
A Center for Caring
Alexis underwent her first surgery at 5 weeks old, and by the age of 2 had six surgeries to repair her cleft lip and palate. But surviving the surgeries wasn’t all that was required of Alexis.
“Among other things, children like Alexis often need extensive dental work and speech therapy. In addition, a geneticist is needed to rule out any other developmental problems,” explains Mislen Bauer, MD, Medical Director of the Craniofacial Center and pediatrician and geneticist on staff at Nicklaus Children's Hospital, formerly Miami Children's Hospital.
“In the past, families had to travel across town to visit various specialists, so we created the Craniofacial Center to provide multidisciplinary care in one place.”
Now, children are seen at least twice a year by a team of specialists including a dentist; plastic surgeon; social worker; pediatrician; speech pathologist; and an ear, nose and throat surgeon.
“Alexis was one of the first patients at the Craniofacial Center,” says Helena. “I was really grateful that there was somewhere I could turn for guidance and hope. At the center, there was a team of people to educate me and to reassure me that I was doing a good job caring for Alexis. It was such a relief!”
A Difference You Can See
Now, after three years of speech therapy and six surgeries, no one would suspect Alexis’ story of struggle and survival. But her mother will never forget.
“The progress was slow, but the results are amazing!” says Helena. “I am so grateful for the support I received from the Craniofacial Center and Nicklaus Children's Hospital, formerly Miami Children's Hospital.”
In an effort to help other families with children with craniofacial anomalies, Helena and Alexis are actively involved with the Children’s Craniofacial Association (CCFA) at Miami Children's Health Foundation. Helena serves on the board, while Alexis offers the other children cheerful support.
Do you have a patient success story? If so please submit your patient success stories on our success story submission page
For more information about the CCFA call (305)666-2889.