Clara and Melody's Laryngeal Cleft Story

South Carolina, USA  |  October 2025

By Jill Wilkey

Meet Clara and Melody, two amazing Hidden Cleft Heroes! These brave girls have shown us the meaning of resilience and strength through their complex medical journeys and are living testaments to the power of a positive mindset. To quote Clara (age 5), “Girls can do ANYTHING!” And she is right.

The journey to Clara’s type 1 laryngeal cleft diagnosis was a long road, filled with happiness and heartbreak, small victories and devastating losses. 

Clara was born in March of 2020. From the hospital, we went directly into lockdown. For the first year of her life, she was a typical happy and healthy child. We were a family of three living in our bubble of close family and friends, doing everything we could to protect our baby from COVID.  

In 2021, we moved to South Carolina. COVID restrictions began to ease up, and Clara started attending daycare. We also began mentally preparing ourselves for the germs and illness that would penetrate our bubble. Although I was a first-time parent, I understood that every daycare kid has a constant runny nose and perpetual sniffles. Within the first few weeks of daycare, Clara was sick, just as I suspected. Then she was sick again. And again. Our family became a revolving door at the pediatrician’s office. 

After countless rounds of antibiotics and steroids, ER visits, ear infections, croup, and every virus you can imagine, Clara’s infections became resistant to oral antibiotics. We began visiting the doctor’s office every other day for an antibiotic injection when she had an infection. At this point, I suspected that something was wrong. I needed Clara to be referred to a specialist, I just didn’t know which one. I decided to start with ENT to address her chronic ear infections. While we were waiting on the ENT appointment, Clara developed pneumonia. Then a month later, pneumonia again. It was at this time that I didn’t just suspect something was wrong, I knew it.

I decided the first thing Clara needed was a new pediatrician. Our pediatrician at the time proved to be less than helpful. I felt like my concerns were not being taken seriously and that I was viewed as simply a first-time mom, inexperienced with things like this. I felt so alone and afraid. My child was becoming increasingly ill, and I was made to feel like there was nothing that could be done about it. I didn’t give up. I needed answers.

Since pneumonia was my biggest concern at the time, I sought out a pediatrician who was  experienced in pulmonary issues. The first time the new pediatrician met Clara, I could tell he was listening to me, and he was concerned for Clara too. I felt like I could breathe for the first time since our journey began. The doctor took the time to get to know us and our history. The doctor was patient, understanding, and kind, and immediately addressed her breathing issues and put her on an asthma regimen. Clara was referred to a pulmonologist and an immunologist. I suspected that my gut instinct was right; something was wrong.

The next two years of our lives were filled with specialist appointments, blood tests, x-rays, swallow studies, and the never-ending sick visits. Her asthma worsened, and we were unable to control it at times. After countless sleepless nights doing breathing treatments and multiple ER visits, we were referred to an infectious disease doctor. Clara’s testing showed some immunology concerns that were addressed, but the infections persisted. At this point, Clara’s pulmonologist decided it was time to take an inside look at her airway, and Clara was scheduled for her first bronchoscopy.

Although we were no strangers to surgery (she had already had two sets of ear tubes and her adenoids removed), this was scary for us. Sending our 4-year-old in for an exploratory procedure seemed so unnatural and I was constantly questioning my decision. But we needed answers, and this seemed like the only way. Unfortunately, that scope gave us no new information. The ENT told us that everything looked normal. It seemed like I should have been relieved, but I was devastated. The infections persisted, leading to more ER visits and uncontrolled asthma attacks. I couldn’t help but feel like we were missing something.

I am so grateful that Clara’s pulmonologist agreed. The pulmonologist knew there was something wrong and advocated for another surgery. For the next scope, the pulmonologist wanted a different ENT and pulmonologist present during surgery.

This is when we met the ENT who changed our lives. Just by reading Clara’s chart, the ENT believed that Clara had a laryngeal cleft. We were educated about the condition and surgery was scheduled. Clara’s gel injection surgery was in November 2024. She was so brave! The surgery was an outpatient procedure that took less than an hour. We were able to go home just a few hours after the surgery was completed, and she recovered in less than one day.

At this time, Clara’s little sister, Melody, was 4 months old. Melody was displaying the same symptoms that Clara had: chronic infections, asthma, reflux, choking, and virus after virus. Her infections also became resistant to oral antibiotics. Melody had been hospitalized twice by the time she was 5 months old. I knew she had to have the same condition as her big sister. A swallow study confirmed that Melody was aspirating, and she was scheduled for surgery. I am so grateful that we already had a good pediatrician on our team, and Melody started her asthma maintenance regimen when she was an infant. This cut down our ER trips significantly and we were able to manage her asthma at home.

From November 2024 to April 2025, Clara was thriving. We saw a dramatic decrease in asthma complications, and she was able to handle common viruses without medical intervention. The gel injection had made a huge difference, and we were able to completely avoid the ER throughout the 2024 “sick season.” We were thrilled, but cautiously optimistic, because we knew that the injection would only last 3-6 months. 

Unfortunately, in April 2025, Clara was back to baseline. The viruses returned, and she was unable to clear them without medical intervention. After multiple sleepless nights doing breathing treatments, we scheduled a video call appointment to discuss next steps. The ENT informed us that it was time to perform Clara’s final stitch repair to close her laryngeal cleft. 

My husband and I were so nervous. We knew this surgery was more invasive than anything that she had undergone in the past. We worried how Clara would respond to it and how she would handle a hospitalization.

Clara had her final stitch repair in August 2025 and she did amazing! Clara can find joy in any situation. She was playing tricks on the nurses, telling jokes, making crafts, and eating ice cream just a few hours after the surgery was completed. She was discharged from the hospital 24 hours after the surgery. 

Melody had her gel injection surgery in August 2025. It was scary for us because she had never been under anesthesia before. But of course she did amazing - just like her big sister. 

Melody’s recovery took several days. Her adenoids were removed during surgery, which probably contributed to her longer recovery period. About a week post-surgery, I started to see a difference in Melody’s choking episodes and cough. She no longer chokes on thin liquids, which is a huge win for us! Melody is scheduled for her final stitch repair in November 2025. 

Through it all, these girls are the happiest, most loving, kind, and gentle children. Clara loves dancing, gymnastics, swimming, singing, unicorns, and mermaids. Melody loves doing whatever her big sister is doing. It has been a long journey, but I feel like we are starting to see some light at the end of the tunnel. We have answers, and that is what I have prayed for.

It is my personal goal to raise laryngeal cleft awareness and push for early detection. No family should have to endure such a long, painful path to get answers. I have really enjoyed connecting with other cleft families through the LCN, and I’m looking forward to volunteering with them. I will continue to advocate for my children and all the cleft families who are desperately seeking answers. 

I am so grateful for our amazing team of doctors and I am so proud of the Provider Directory that LCN has created for families to find providers. I encourage all parents of medically complex kids to share their stories, recommend providers, and share their laryngeal cleft tips. It takes a village!