Cleft and Craniofacial Awareness Month — Charlie’s Story

July is Cleft and Craniofacial Awareness Month, which focuses on raising awareness about cleft lip and palate. Cleft lip is a condition characterized by an opening in the upper lip. It occurs as early as the first three months of pregnancy and can cause problems with speech, hearing and social development. Grandview Kid Charlie was born with a cleft lip and underwent a successful cleft palate repair surgery early in life, his story allows us to learn more about cleft lip and how it is treated.

The Discovery

It was my second pregnancy and my husband and I went to the standard 18-week ultrasound. The technician said she would be right back with the doctor. I didn’t think anything of it, but my husband was worried. We were informed that Charlie would be born with a cleft lip and palate. I just stared at the doctor for a bit. I knew what that was but couldn’t process it. I just said, “Okay… so what do we do?” The doctor explained that I would need to do some further blood work, a possible amnio, speak with a geneticist, see a fetal cardiologist and set us up with the Cleft Lip and Palate Clinic at SickKids. It was all so overwhelming and it didn’t hit me until I got back to work, which was probably a mistake after receiving news like that. I had to call my husband and I could not stop crying. It was all so devastating for both of us, but all I could think about was how much I already loved our son. I did all the tests, saw all the specialists and we prepared like crazy for this condition before our little boy arrived.

The Journey

When Charlie was born I was so happy to finally meet him! Seeing his cleft lip did not phase me at all. He was my sweet, beautiful baby boy. He needed to be fed with a SpecialNeeds Feeder by Medela, which provides help to cleft palate babies who cannot create a vacuum to drink. We had training on how to use that with the help of the wonderful NICU nurses at the hospital in Oshawa. After nine days in the NICU, he was ready to go home. It was my birthday – best birthday present ever! Once we were settled at home, the countless appointments at SickKids began. The amazing team from the Cleft Lip and Palate Clinic consisted of Plastics, ENT, Orthodontics and Speech. Orthodontics plays a HUGE role in helping cleft babies before surgery! They made Charlie a Nasoalveolar molding (NAM), which is a pre-surgical, custom-made orthopedic appliance that essentially brings together the two sides of a cleft lip or palate close together. The NAM caused Charlie pain as he barely slept for 9 months. Once his cleft lip was repaired, he was pain free and we hired a sleep doula to help him sleep through the night. We highly recommend a sleep doula for babies who won’t sleep! 

The cleft palate repair was more invasive. Charlie was in a lot of pain post-surgery. For recovery he needed to eat soft foods for 6 weeks, as well as wear pediatric arm restraints to prevent him from putting his hands in his mouth. Charlie also recently had surgery for a cleft palate extension called a pharyngeal flap. This flap creates a bridge at the back of the throat to help the velopharyngeal valve close and prevent air from leaking through the nose when talking. His recovery from that was awful and painful, but he prevailed. Since these surgeries, Charlie has had speech therapy with Grandview, Holland Bloorview and with a private SLP. He works hard every week to improve his speech and has really learned to enunciate each word slowly. 

Along with a cleft lip and palate condition comes ear infections. Charlie has had multiple surgeries to insert ear tubes due to ear infections and bouts of hearing loss. Charlie currently has a retracted ear drum. SickKids is hoping it will heal on his own with the warmer summer weather.

Charlie’s journey is far from over. He will still need different types of surgeries to improve his cleft lip and palate condition, up until he is in his 20s. Luckily we have lots of support from SickKids, SLPs, Charlie’s school and from family and friends!

The Awesome Charlie

Charlie loves to swim, especially at our cottage! Charlie loves to play soccer, baseball and Nintendo. He loves to dance and sing. He loves safari animals and is obsessed with lions. He is also quite the thrill seeker as he loves to ride roller coasters! He is a happy, energetic and creative kid. When he is not building forts or having battles with his toys, he likes to goof off with his older sister, Samantha. His laugh is infectious! Charlie is turning 7 in a few months and already decided that he will be having a Super Mario Bros. themed birthday.

Charlie had a beautiful smile with his cleft lip and still does post repair. We love him so much and are so proud of this brave young boy!