A Family’s Journey With Cleft Inspires Them To Help Others

By Evan Koch

Katherine and Richard Rose responded directly to the diagnosis their son, Luke, would be born with cleft palate.  “We decided to tackle the issue head-on and find the best care and the best plastic surgeon possible for Luke,” Katherine Rose said.

One of the most common birth defects, cleft palate can severely impede a child’s ability to breastfeed, inhibiting growth. Children with cleft palate often experience dental, hearing and speech difficulties that require medical intervention or therapies.  

The Roses chose Children’s Memorial Hermann Hospital, where Luke underwent surgeries to correct a unilateral cleft lip and palate, that have enabled him to thrive as he approaches his second birthday. It was also where the Roses discovered a dedicated support network of parents who inspired the family to give back and address an under-recognized group of children in Houston’s cleft community. 

An Unexpected Diagnosis and A Swift Response

An ultrasound when Rose was 20 weeks pregnant revealed that Luke would be born with a cleft palate, a hole that forms in the roof of the mouth when the palates do not come completely together during development.

“We were really surprised at the diagnosis,” she said. “As a first-time mom, it’s really hard emotionally the first time you learn something may be wrong with your baby.”

The Roses quickly acted on a recommendation from their pediatrician and met with affiliated pediatric plastic surgeons John Teichgraeber, MD , and Matthew Greives, MD, on the Texas Cleft Craniofacial team at McGovern Medical School at UTHealth, which works in collaboration with Children’s Memorial Hermann Hospital.

Learning What To Expect

The Roses were given an outline of the typical treatment plan for cleft lip and palate patients, beginning with an assessment when Luke was 2 weeks old before a preliminary treatment plan was developed. Luke’s lip would be repaired when he was 3 or 4 months old, followed by palate repair at age 1.

Luke would then need speech therapy. Between the ages of 7 and 9, a bone graft procedure may be needed to create a solid foundation for Luke’s teeth to grow, followed by braces. The final surgery would take place when Luke was a teenager. During this procedure, his jaw would be realigned and any remaining nasal defect would be addressed.

“It was a lot to take in,” Rose said. “But seeing the outcome was very reassuring.”

Tapping into a Support System

During Rose’s first visit to Children’s Memorial Hermann, clinical care coordinator Leanne Doringo, MSN, RN, put her in touch with Kenzie Schoelman, whose daughter, Macy, was born in 2015 with a complete unilateral cleft lip and palate. 

“Kenzie became a huge influence in our life,” Rose said. “She became a sounding board for us and really started relieving a lot of my anxiety. She knew what I was going through and I was able to see the tremendous improvement Macy had at the hospital.”

Parent-to-parent support has become an ancillary hallmark of Children’s Memorial Hermann Hospital’s cleft program, which points parents toward peer counseling groups, like the Houston Cleft Moms Facebook group.

“Peer counseling offers so much value because these parents have lived through this and can offer insight into so many different areas,” said Dr. Greives, who repaired Macy’s cleft lip and palate. “Our parents who have gone on this cleft journey are a tremendous resource for our staff and other patient families.”

Throughout the remainder of her pregnancy and Luke’s subsequent surgeries, Rose remained in contact with Schoelman and other cleft moms. The support came in various forms—from visits in the hospital to tips on how to keep Luke’s hands away from his mouth after surgery.

“You want to help people with something that’s so difficult to get through and encourage them whenever you can,” said Schoelman, who received support from two other cleft mothers throughout Macy’s journey.  

Giving Back Through Friendship Smile

Dr. Greives repaired Luke’s cleft lip and palate as planned. As Luke recovered from both surgeries, his parents had time to reflect on their son’s journey from prenatal diagnosis to recovery.

“Even though it was difficult to experience, we were overwhelmed by the support we received and how blessed we were to be in touch with these people,” Rose said. “We thought, ‘We have to do something to give back.’”

After researching the various issues experienced by children born with cleft lip and palate, the Roses began Friendship Smile, a non-profit dedicated to providing positive environments for the development of communication skills and social bonds for Houston-area children 8 to 14 years old who have cleft lip and palate.

“Babies with cleft get a lot of attention, but there aren’t as many resources for those children as they get older,” Katherine said. “We wanted to focus on a charity that gives back to those older kids and let them know we remember you. We’re here for you. We want to help you so you don’t feel alone.”

Children born with cleft in that age range often have a visible scar from cleft lip surgery and may still be going through speech therapy, either of which can make them stand out from peers. 

“Around age 8, kids start to notice they look different,” Dr. Greives said. “There is a lot of research looking at how children adjust and make social interactions during this time period. So we were thrilled to hear the Roses were focused on addressing this age group.”

Transitioning into Supporters

The Roses enlisted the help of Schoelman, who had experience working with another cleft charity. Friendship Smile raised enough proceeds to fund a day of activities for former Children’s Memorial Hermann cleft patients at Camp For All, a barrier-free environment where kids of all abilities are welcome to explore.

Doringo helped connect interested patients and families with Friendship Smile. On a Sunday in early March, 19 children from 15 families spent the day at Camp For All participating in zip-lining, archery, fishing, basketball, a petting farm and other activities.

“It was inspiring to see the kids at camp and how they came out of their shells and made friends with one another,” Schoelman said.

Some kids told Rose it was like spring break to them.

“When you bring kids with similar backgrounds like that together, they get a little more courage to feel like themselves,” she said.

Luke, who is already socializing well at his own school and is now an eager and helpful big brother to younger sister, Clara, also attended the event as an observer. By the time Luke is old enough to join the other kids, Rose hopes to have expanded the Camp For All visit from a day to a weekend.

She would also like to increase Friendship Smile’s reach to other age groups. 

“We are so, so thankful that we’re in a position where we can give back.”

Click here to learn more about the Pediatric and Plastic Reconstructive Program at Children’s Memorial Hermann Hospital. To contact us, click us here.

Leave a Reply

Your email address will not be published.

lohenhen