Purpose Behind the Cleft

Alexis GiannattasioFamily Stories, School-Aged Child

A little over 6 years ago, my life as a mom changed forever. Our two older children each had their own medical conditions that put us to the test, and we were hoping for a healthy, normal baby throughout my third pregnancy.

Our son Nathan was born full term, but he couldn’t nurse and had mucous discharge coming out of his mouth and nose. The nurses took him away for observation, and I sat with my husband in the cold hospital room, listening to the heart monitors beeping, wondering what could possibly be going on. Hours later, the nurses returned to tell us the news: our baby was born with a complete bilateral cleft palate. I knew nothing about clefts, other than that it was a facial difference and that I had seen commercials about it.

Before we knew it, we were being taken to the NICU. A whole team of doctors had arrived to run tests and ask me questions. One of the nurses wanted to show me his cleft palate. I was scared to look. She opened his tiny mouth as far as she could, and I saw it–a huge hole in the top of his mouth. They explained that he would need surgery to correct his palate before he turned one. I felt comforted by the team of doctors and professionals supporting us from the beginning. I knew we wouldn’t be doing it alone, even though we were venturing into unknown territory.

Nathan saw doctors and specialists on a weekly basis at the ACPA Approved Team at Loma Linda University Health group–a plastic surgeon, ENT, and the entire craniofacial team. The speech therapist and nurses helped me through those early months and made sure he was developing normally. Genetic testing was done, and it was discovered that he had a small duplication of chromosome 22, which was very rare, and which likely caused the cleft palate. He had the palate repair surgery at 9 months old, and after the surgery he developed a fistula, or small hole, in the opening of his palate. I was terrified that we’d have to do the surgery again, but the plastic surgeon recommended waiting to see if it would close on its own. I am proud to report that as of today, it is a VERY small hole, which Nathan really likes – it allows him to make his special “clicking” sound.

Our team at Loma Linda University was there for me whenever I had a question, and they made sure Nathan got the best care possible. Nathan began speech therapy at 18 months old to correct articulation and catch up on language development. I got to sit in on his weekly sessions, amazed at the progress he made. Speech therapy seemed like magic to me! I started thinking about going back to school, and I looked into speech therapy. I was lucky enough to finish a 2nd bachelor’s program in communicative disorders at Utah State University and then receive acceptance to a master’s program in speech and language pathology at Idaho State University, where I just finished my first semester.

Now that I look back on the early years with Nathan, I can see purpose in everything. Yes, we wanted a healthy, normal baby, but you know what? He was healthy, and he is normal. If it weren’t for Nathan’s cleft palate, I would never have been able to sit in on speech therapy sessions and see how wonderful that profession is. I can’t wait to give back to other children when I graduate–to give back to children who are like my Nathan.