Livvie Montgomery is a happy, determined two-year-old who loves bubbles, playing outside and any kind of shopping. In recent months, she’s been surprising her parents daily by using new words and new phrases that she’s recently overheard them saying.
Her parents, Meg and Chad, are always very glad to hear Livvie’s happy chatter – even if means they have to watch what they say. Livvie was born with a cleft palate, which can affect hearing and make speech difficult. Both have been part of her specialized, team-based treatment program.
Immediate team support
A cleft palate is a gap, or opening, in the roof of the mouth. Orofacial clefts (cleft lip, cleft palate or both) are one of the most common birth differences in the U.S., and though they can be repaired with corrective surgery, certain functions need to be closely monitored.
With a cleft palate, the opening can cause ear drainage issues and affect the ability to form certain sounds. Since she was just two days old, Livvie has worked with a team of surgeons and specialists who provide care that extends well beyond surgery. Among other issues, “they look closely at her ears and hearing, which can also affect speech and then learning, and everything down the line,” Meg remarks.
The day her cleft palate was discovered, doctors put Meg and Chad in contact with craniofacial and plastic surgeon Dr. Jennifer Rhodes. Within hours, Dr. Rhodes came to meet Livvie and talk with them about what to expect. Meg still tears up with emotion when she describes hearing the difficult news and how helpful Dr. Rhodes was that day. “We were pretty surprised, and she came in and was just awesome,” Meg says. “We felt very comfortable right away. She has so much past experience with this – she’s done many of these procedures and she made us feel like it was no big deal. We were also very comfortable knowing we had an experienced team.”
Dr. Rhodes leads our Center for Craniofacial Care. The center has five specialized teams for craniofacial conditions including a cleft lip and palate team. Based on the needs of each condition, the teams have health care providers from more than 15 specialties who work together to ensure each child’s surgical, speech, hearing, visual, dental, developmental and psychosocial needs are met with coordinated care as long as needed.
Coordinated care, combined surgeries
Feeding support is one of the first things team addresses with a cleft palate. Typically, a child cannot have corrective surgery until they are at least six months old and the gap in the palate makes it nearly impossible for newborns to generate the suction needed to feed. During the months before surgery, speech-language pathologist Ruth Trivelpiece, the center’s program coordinator and a nationally recognized expert in feeding disorders in children with craniofacial conditions, provided assistance with the specialized bottle system Livvie needed for eating, while the team monitored her weight and growth closely.
During the surgery, muscles and tissues in the roof of the mouth are stitched together to close the gap. Livvie underwent this procedure when she was 10 months old and as part of the surgery, the team’s ear, nose and throat specialist put drainage tubes in her ears to minimize ear infections and potential hearing issues. This coordinated treatment reduces the number of surgeries a child needs and improves overall care.
Meg was able to hold and comfort Livvie right after the three-hour procedure and as she recovered overnight in pediatric intensive care. “The nurses were wonderful and so kind,” she says. “Livvie laid on me and her nurses hung in there and worked around me. They even changed her diapers that way.”
The repair went well and Livvie experienced a significant drop in ear infections. Her parents were very relieved to see how quickly she bounced back, showing signs of her characteristic personality within a week’s time. “We are so glad that part is over,” Meg says.
Livvie comes twice a year to see the cleft lip and palate team which has specialists in audiology, craniofacial surgery, dental care, genetics, oral and maxillofacial surgery, orthodontics, otolaryngology, psychology and speech/language pathology. The appointment is typically three hours which for a busy two-year-old “can be a lot,” Meg admits. “But I will gladly keep her entertained for those hours to be there. We would not give it up for the world.”
Through the years, Ruth and the team’s speech therapists have consulted on Livvie’s speech. This has been a particular area of concern for Meg as speech affects so many aspects of development and she has spent a lot of time with Ruth, asking questions and finding out what she can do to help.
Thankfully, Livvie’s progress has been very strong, so much so that it was recently determined she will not likely need speech therapy. “She talks a lot,” Meg says. “Her teachers at preschool say so too. She’s definitely beyond what we were expecting in terms of talking.”
Hearing Livvie interacting with her preschool friends (playdates are her most favorite activity and she can’t contain her joy when she knows one is planned) and seeing the often-fearless personality she’s developed despite her medical issues, Meg says it can be easy to forget where Livvie started: “She’s a normal kid. I have to remind myself she was born with a cleft palate and what we went through emotionally and she went through physically.”
What Meg won’t forget anytime soon, though, is the team that helped Livvie get where she is today. On Livvie’s medical forms for preschool and summer camps, she always specifies to take Livvie to CHoR even if it isn’t the closest hospital. “We would not go anywhere else. No way,” she says. “The care she received was top notch. We are very lucky that we have CHoR and Dr. Rhodes right here. They are the best of the best.”
For Livvie and most others born with a cleft palate, the cause is unknown.
Livvie is very much looking forward to becoming a big sister this fall. There is a small chance Livvie’s younger sibling (due in December) will have a cleft palate too, but Meg is not worried: “We’ve done it before and it is a difficult road, but it was no big deal for Livvie. It is so good to know that whatever happens we’ve got good people in our backyard at CHoR.”