First, what is a cleft palate?
Cleft palates and cleft lips are splits in the upper lip, roof of the mouth, or both. Among the most common birth defects, cleft palates occur when facial features don’t close fully while the baby is developing.
Babies born with cleft palates can experience normal function an appearance after a series of procedures.
Introducing UTHSC ENT’s Cleft Palate Clinic!
Recently, our Pediatric ENT specialists opened a brand new Cleft Palate Clinic.
This clinic is a multidisciplinary collaboration with pediatric otolaryngology, speech language pathology, registered dietitians, audiology, and nursing. Focusing on the numerous feeding issues that newborns with cleft lip and cleft palate, our specialists look into infant weight gain, various bottle systems, flow rates and formula options.
Located at the downtown LeBonheur and East LeBonheur locations, our world class experts are currently seeing newborn patients twice a month.
Enter the amazing success story of Tallulah, as told by her mother Carmen McGuinness!
Patient Testimonial: Carmen McGuinness, Mother
“I am writing to you with regards to my daughter, Tallulah, and the care that she has received as a patient at the cleft palate clinic, headed by Dr. Rose Mary Stocks.
Tallulah was referred to the cleft palate clinic in early March. Her two month well child check up indicated that she was failing to gain weight; at two months, she was barely 7lbs. My husband and I struggled with feeding our daughter. During feedings, Tallulah would cough, gag, and cry uncontrollably. It would take approximately 40 minutes for her to finish a 1.5 oz bottle. I dreaded feeding times because it felt like I was drowning my child. We vocalized these concerns to other medical providers, including her pediatrician, an ENT, and a plastic surgeon. They all assured us that this was normal feeding behavior for a child with a cleft palate. As parents, we felt so helpless because we couldn’t feed our daughter.
It wasn’t until our first appointment with Dr. Stocks that we learned that Tallulah’s behaviors were problematic. Dr. Stocks explained to us that although these behaviors were a result of her cleft palate, they should be corrected.
I have only seen my husband cry twice in the seven years we have been together. The first was on our wedding day. The second was the day that he met Dr. Stocks and her team. For the first time since our baby girl was born, we felt hopeful. The team listened to our concerns, answered our questions, and assured us that they would help us take care of our daughter.
Tallulah’s feeding journey has not been easy. My husband will admit that getting Tallulah to gain weight has been the hardest thing he has ever had to do. It has required biweekly doctors’ visits, daily weight checks, frequent changes to her diet and medicine regimen, and a three night stay at Le Bonheur.
But through this process, Dr. Stocks and has been incredibly compassionate, attentive, and patient. Her nurse Tatiana is also very eager to help. She is quick to return my phone calls and assure me that no question or concern is invalid.
The dietician, Natalie Seabolt, has been patient with us as we’ve tried multiple formula supplements, thickeners, and reflux medicine. She is always ready to help us trouble shoot and find a new solution. The speech language pathologist, Aimee Claire Petra, has helped us feed our daughter. She has undoubtedly given us one of the best gifts we can ever expect to receive: seeing our daughter find joy in eating.
Tallulah is now six months. She is still a little peanut and we, as well as her medical team, have come to accept that she may always be a little peanut. But she is thriving. She is eating like a champion, often smiling and cooing during feedings. Her demeanor is calm and pleasant. She is a completely different baby from the one that we first brought to the cleft palate clinic.
We know that this journey is far from over. But in this season of life, my husband and I have learned to celebrate all the things, both big and small. Today we are celebrating our sweet girl weighing eleven pounds. She even has some fat rolls!
We will never fully be able to express our gratitude for the cleft palate clinic. As parents, we have been given the resources and education to care for our daughter.
Joe and Carmen McGuinness”
How UTHSC ENT can help:
As Carmen’s testimonial showed, UTHSC ENT combines department-wide collaboration, state of the art treatment, world class specialists, and personalized care to deliver life-changing results.