Jack's Journey

By Gary Logan

Caitlin Townes’ pregnancy with her second child, Jack, had been going along smoothly and she was looking forward to meeting him in person. Then, at her 20-week ultrasound, she was informed that the test revealed cleft lip and palate, which her obstetrician confirmed. What did she need to know, she asked herself. 

“I had no knowledge of cleft lip and palate,” says the Mt. Pleasant, South Carolina mom. 

Neither did her husband, Patrick, though he felt their baby was in good company after learning that former National Football League quarterback Peyton Manning, his favorite player, was also born with a cleft. 

As parents, however, they initially felt alone, learning that in the United States only between 6,000 and 8,000 babies are born each year with cleft lip and palate, which occurs when tissues making up the lips and mouth do not join completely before birth, resulting in an opening in the lips and palate, or roof of the mouth. They had also found that children with cleft lip and palate may face problems with feeding and speaking clearly and may be prone to ear infections and dental problems. What would they and Jack face? Where should they go for care? 

Then a friend of Caitlin’s, a resident at the Medical University of South Carolina (MUSC), referred her to ENT-facial plastic and reconstructive surgeon Krishna Patel, M.D., Ph.D., co-director of the Craniofacial Anomalies & Cleft Palate program at MUSC. Meeting with Patel in the 30th week of her pregnancy, Caitlin says Patel first gave her a timeline of Jack’s care, including when his first and second cleft-repair surgeries would come, feeding and speech therapy consultations, and insertion of an oral device designed to reduce the amount of surgical treatment required for babies like Jack with wide clefts. Patel also connected Caitlin with an app to track Jack’s care, including adjustment to school and orthodontics, from birth to adulthood. Suddenly, Caitlin no longer felt alone.
“Dr. Patel was very helpful and available; she gave us her text number and would check in once a week,” says Caitlin. “She was very responsive—like a family member. We felt the team was like in it with us.” That, says Patel, is the goal—to engage parents with empathy and knowledge. 

“At first, it can be stressful for families, so we try to meet them where they’re at, to prepare them early on,” says Patel. “If we do that, we find families frequently become intimately involved with the care.” 

Patel says she has a younger family member with a bilateral cleft palate—where the cleft is on both sides of the lip—which influenced her career choice and inspired her to be part of a program for children with cleft lip and palate and their families. 

“That experience made me aware of how we have a lot of work to do in making treatment easier for patients and parents to go through,” says Patel. “For me, it was a driving factor in helping to form our team and approach.” 

For Patel, who has been a cleft surgeon at MUSC for 15 years, that means keeping up with the latest advances and innovations in surgical care, utilizing new simulation models, and being active in groups like the American Cleft Palate Craniofacial Association (ACPA), where Patel currently serves as a board member. Patel also participates in surgical global health trips in South and Central  America to treat children with cleft lip and palate where access to care is limited. 

However, treating a child with a cleft, Patel stresses, involves much more than surgery. In addition to Patel, the tight frontline staff of the team includes co-director and speech language pathologist Melissa Montiel, MS, CCC-SLP, and craniofacial coordinator Julia Black, LMSW, who Montiel refers to as “the three Amigos.” The team, accredited by the ACPA, also draws on the diverse strengths of the entire craniofacial service at MUSC Shawn Jenkins Children’s Hospital, including oral-maxillofacial surgeons, pediatric otolaryngologists, plastic surgeons, orthodontists and dentists, and audiologists, among others. 

Facing the multispecialty tasks at hand, Patel says the team pulls it off in part through their ongoing contact with parents and coordination with all cleft-related services by Black, who is also a licensed master social worker. 

“At first it can be a complicated and stressful diagnosis, so I am there from the get-go to help them express their feelings and support their needs,” says Black. 

In addition to scheduling appointments, those needs may include helping families navigate insurance, financial assistance, transportation, and for families far from the hospital, lodging and resources in their own backyard. 

“There are services I can get them in touch with closer to their home, like a home-based case worker in their own community to help make their baby’s care possible,” says Black. 

That’s why, among other reasons, Patel stresses “Every accredited cleft or craniofacial team should include a social worker.”

Like Patel, events in Julia Black’s life also inspired her to follow a path to cleft care. Like the many patients she sees, Black experienced dental and orthodontic care as a child.

“I was sort of drawn to craniofacial because of that overlap, and this role involved helping children and families, which I greatly care about,” says Black. “I do think in this specific field people are often drawn to it for personal reasons.” 

Melissa Montiel’s personal path to speech language pathology was triggered by a high school sweetheart’s mom suggesting the field was a “good match” for her. Montiel agreed and started volunteering at a local hospital when she was 19. “I learned pretty quickly this is what I wanted to do—cleft lip and palate.”

As a speech language pathologist, and like Patel a 15-year veteran of the cleft team, Montiel first gets involved with cleft care around week 18 of the pre-natal stage. When a cleft is identified, she consults with the mom regarding feeding after the child’s birth. Babies born with cleft palate are unable to be breast fed due to poor suction but can feed through a special bottle that comes with an extra valve. Montiel does encourage placing the baby to the breast after bottle feeding to help stimulate milk supply for pumping and to facilitate mother-child bonding, if that is a goal of the family.
“In the prenatal stage, it’s more important for the parents to meet with the speech pathologist than the surgeon, to prepare them to have a child with cleft palate and to make sure they have the right tools to feed the baby,” says Patel. 

As feeding issues may occur in the first year of life, Montiel follows patients’ weight closely after birth. Making sure the bottle is working properly is important. And like other team members, Montiel clarifies the individual treatment plan for parents, stressing that no two children with clefts are the same. 

Montiel also dispels myths about clefts and their treatment that serve only to raise anxiety levels. Babies born with an isolated cleft palate, she notes, should not need a breathing tube or gastrostomy tube (G-tube) inserted through the belly for direct nutrition from the stomach, as one parent was told before changing her baby’s care to MUSC. 

“That’s what we thrive on, to help families understand the full process and what is and isn’t expected,” says Montiel. “If there are no problems at birth, the child does not need a breathing or G-tube.

”Conversely, she adds, some patients may not receive all the services they need. She recalls a former patient referred to MUSC from an outside hospital without an accredited program. The child chose not to speak at school because of his disordered speech, affecting his education and personal life. He had no friends, says Montiel. 

“He needed more surgery for his speech, which we got for him along with some articulation therapy and his entire personality changed,” says Montiel. “It was late, but we were able to impact his speech function and give that child the best childhood we could.” 

That’s why Montiel also does community outreach and lectures in Columbia and Greenville, among other communities, to support cleft palate speech and swallowing care beyond Charleston, and to bring valuable experiences back to MUSC, as well. She recalls a recent visit with a community speech pathologist who was seeing the first patient in her career with cleft palate: “I want to be an ally and resource for her and her colleagues, so kids don’t go through life with their speech sounding a certain way.” 

One way may be hypernasality, caused by the soft palate not being able to properly close off the mouth from the nose while speaking and therefore letting air escape through the nose. There is a surgical remedy, notes Montiel: “The perception is that the major surgical focus is on appearance, but unless the child is achieving full function regarding eating and speech, our work is not done.”

How was Jack’s journey? Caitlin says initially it was “hard,” but his recovery “good.” She had been diagnosed with preeclampsia, a hypertensive disorder of pregnancy, a factor in Jack’s admissions to the Neonatal Intensive Care Unit for three weeks after his delivery. Also, born at 36 weeks, Jack’s lungs were not fully developed, and with cleft he faced feeding issues. 

When he came home there was the ongoing adjustment of the oral device to help narrow his cleft and lessen the burden of future surgery, along with weekly visits to MUSC, where Caitlin found support from other moms of children with cleft. Giving back, she shared her experience in training sessions with medical students and new moms of children with clefts.

Then the best news—his two cleft surgeries had been scheduled.

“This was very exciting; we would see what Jack’s little smile will look like. Before the surgery we were so used to seeing his face-gear apparatus,” says Caitlin. “Now at 2½ and the cutest, most normal baby you could see, he’s talking pretty good and having a normal development for a boy. Everything we thought was an issue is not—he has been a blessing.”

Caitlin, however, does know there may be challenges ahead for Jack, which is why the team follows patients up to age 18. While the two major cleft repairs occur in the child’s first year of life, dental and orthodontic care kick in once baby teeth come out. Some patients require bone grafting along the gum line, some may need veneers in their teenage years, and some may need surgery to change the shape of the nose to improve breathing—all reasons, among others, why Patel stresses an accredited and dedicated team is required for best-practice cleft care.

Caitlin agrees: “We were lucky. For this to happen in Charleston was a good thing because we found a very specialized team.”

Citing the secret sauce shared by the team, Montiel adds, “The thing I love the most about working on the cleft lip and palate team, there are no egos. We’re all very passionate, love this population of patients and just come together in caring for these children.”

Jack today, says mom Caitlin Townes, is a “curly haired blond wild boy, all boy” and like his father, enjoys playing golf.