Genesis’ story: Confidence and big smiles

Jacqueline had a burning question on her prenatal ultrasound: Does her baby have a cleft lip or palate?

It’s a very specific question, but Jacqueline wanted to know because she was born with a cleft lip and palate. This happens when the mouth doesn’t form typically during pregnancy, leaving an opening in the lip, the roof of the mouth (palate) or both.

The chances of a parent who had a cleft having a child who also has one is about 1 in 25.

“The doctor ordered a 3D scan so they could see the baby’s face more clearly,” Jacqueline says. “Sure enough, she had a cleft lip and palate on both sides of her mouth.”

She told her mom who said without question: We’ll go to Children’s Health_., the same place Jacqueline had received her own cleft care.

"I don't have any bad memories about being at the hospital," she says. “I just remember leaving happy and going home with a coloring book.”

In good hands at Children’s Health

Soon, Jacqueline was meeting with James Seaward, M.D., Plastic and Craniofacial Surgeon at Children’s Health and Associate Professor at UT Southwestern.

Then he explains more details: Genesis would need her first surgery around 3 months old to close her cleft lip. Then she would have another surgery for the cleft palate around a year old, and potentially more surgeries in her preteen and teen years.

He also told Jacqueline that she and her daughter would not face this journey alone. A team of specialists would be there to help, including feeding experts for babies who have trouble feeding, ENT doctors to monitor ear-related issues and psychologists to help children navigate any emotional challenges related to facial scars.

“It was scary to learn that my baby would need surgery so young,” Jacqueline says. “But Dr. Seaward walked me through everything and helped me feel comfortable. We knew Genesis was in good hands.”

A team of experts working together

In the months leading up to the first surgery, Jacqueline met with Yong Jong Park, D.D.S., Pediatric Craniofacial Orthodontist at Children’s Health and Assistant Professor at UT Southwestern. Dr. Park recommended pediatric nasoalveolar molding (NAM), a device that helps the mouth grow into a more typical shape before surgery.

Dr. Park answered all of Jacqueline's questions – including one about her own teeth. As an adult, she’d been told orthodontic treatment would be too complex because of the shape of her palate.

"I asked if there was any way I could do braces with him," Jacqueline says. "He doesn't usually see patients over 18, but his team figured out a way."

Now, Jacqueline and Genesis sometimes have appointments together. The team coordinates as many visits as possible on the same day, including visits for Genesis with feeding specialists.

Like many babies born with cleft lip and palate, Genesis had trouble breastfeeding and taking a bottle because a cleft can make it difficult to create suction. The feeding team helped Jacqueline find a special bottle and feeding positions that worked best for Genesis and closely monitored her growth and nutrition.

When the day came for Genesis’ first surgery, the minutes crept by as Jacqueline and her mom sat in the waiting room. Thankfully, Dr. Seaward had prepared them. They knew how long the procedure would take and had an app to receive updates during surgery.

“Those updates really gave us peace of mind. Every time we’d start to worry, we’d get another update that said ‘She’s doing well’ or ‘Everything is looking good,’” Jacqueline says.

Confidence and a big smile

Genesis had her second surgery with Dr. Seaward at about a year old. That’s likely her last surgery for a while, but she’ll continue to see her team for routine care

For now, Genesis is a toddler who loves dancing and playing with her family. Her mom hopes she carries her bright personality and confidence with her as she grows up, and feels good about her appearance – even if she has a small scar or a slightly different facial structure.

“She has this big smile and confidence that I hope she always has,” Jacqueline says. “And if she starts to lose that, I want her to know: Her mom, grandparents, aunties and uncles — we’re all always here for her and we know just how amazing she is.”

Learn more

Children’s Health offers expert and compassionate care for kids with cleft lip and palate, from before birth to young adulthood. We offer care and expertise for every aspect of their health, from surgery to nutrition to mental health. Learn more about our cleft lip and palate program and services.