Hear Me Smile
Hear Me Smile! 
By Etoile LeBlanc
I want to share a personal story about a child I met while on a surgical mission with HTCNE. It’s a story of a child’s struggle to accept who and what he was and the moment he was provided the opportunity to change his life.
I had seen him near the end of the corridor. Juan Carlos sat quietly, in a corner of the lobby of the Fernando Troconis Universitario Hospital in Santa Marta, Colombia. He had traveled a total of 5 hours by burro and bus with his older brother, Jose Jesus. He usually came with his mother, but she was now working in a much needed job, cleaning. He was there to be screened by a surgical team from New York. He traveled with little in his pockets except for the money to get back home and a picture of Carlos Vives, a Colombia superstar, he had taken out of a dog-eared magazine. He liked his face - no scars, and he loved the way he sounded when he sang. He had come to this hospital 4 years in a row. This team of surgeons, anesthesiologists, pediatricians and nurses had repaired his cleft lip when he was three, and his palate when he was 4. He returned to the annual process of lining up amongst the other nearly 120 children and their families to be screened for the possibility of any addition surgeries.
He had no expectations this time. He had learned to shield the hurt and live with the comments from his family and kids at school about his facial scars and learned to hide the shame of not being able to speak. He hid the frustration and anger behind a wide, radiating smile. He practiced that smile. He was used to many people coming up to him and saying, “ What a great smile you have.” He never responded by words, just a wider grin. Saying something would give away what he was hiding- a rush of air coming from his nose, and grunts and mumbles from his mouth whenever he spoke. His uncle, called it “monkey talk”. When he was a baby, his mother told him that food and milk would come out of his nose whenever he ate or drank. He used to wear a special bib just to catch it. He remembers that bib, and is still reminded of it today, whenever he eats ice cream or chocolate.
Cleft lip and palate is a congenital anomaly of multi-factorial causes that not only causes facial and dental deformities, it also causes debilitating speech and eating problems. The incidence of clefting disorders is usually 1 in 500 births (World Health Organization, 2010). Although surgery is performed on a cleft palate at 9-12 months of age, with the intention of reconstructing the palatal defect for speech, the incidence of speech problems still occur with 30-80% frequency.
The incidence of nasal speech (called hypernasality) and abnormal sound production (called compensatory articulation disorder secondary to velopharyngeal insufficiency) is nearly 100% in the children seen in Santa Marta in 2010 (HTCNE Clinical Speech Services Report, 2010). In the United States, the incidence is much lower due to the access to therapeutic and surgical management available to children at a much earlier age. Yet, in developing countries, the access to such care is usually non-existent. The primary focus of surgical teams is providing the initial surgical management.
Juan Carlo arrived on this Sunday in February at 8 am in the morning. It was now 3 pm in the afternoon. He had little to eat and even less to drink in the heat of the day. He heard his name being called. He went through the process he was very familiar with, a doctor would ask him to open your mouth, stick out your tongue and “di coca cola”, with tongue depressors, and pen lights, and experienced surgical hands, they touched and, prodded his nose, his upper lip and palate. He went through the process for at least three doors. That’s how he knew he was going he could be one of the lucky ones going to receive surgery- he counted how many doors he was asked to sit in front of. The more doors, the more rooms, the more evaluations, the higher the chance he would have surgery.
He finally came to a room where the questions were related to the way he talked. At first, he would just smile when asked a question. Yet, his brother kept prodding him to answer. He winced inside every time he heard his mouth utter the requested word or phrase. As the questions increased and he was asked to repeat more words and phrases, he realized that the focus had changed. Time was being spent on the way he spoke. He sat uncomfortably, yet patiently sat while the doctors put a long skinny tube in his nose and looked inside as he repeated words again.
Juan was being assessed by a team made up of a craniofacial speech physiologist, Etoile LeBlanc, speech pathologist, Helen Buhler, assisted by graduate student Marianella Bonelli, and craniofacial surgeon, Lianne de Serres. It was the first time in the 26-year history of Healing the Children Northeast that a team designated solely for the purpose of treating craniofacial speech disorders was formed.
As the black tube was being pulled out, he began to realize the conversation was about surgery and therapy for his speech. All to occur this week, while the doctors visited. It was the first time, he felt nervous. An uneasiness settled over him, not because of the possibility of surgery. It was the possibility that he could expect more from his mouth, more from his words, more from his life.
Juan underwent a procedure called nasopharyngoscopy. It is a fibreoptic scope used to visualize the structure and physiology of the palatal muscles during speech. It provides information on why a child may sound hypernasal, on whether a child requires speech surgery, on how to specifically design the surgical procedure, as well as tell us information on how to design therapy.
Two days later Juan was dressed in a hospital gown, walking with the anesthesiologist to the operating room. He recognized the room, but not the faces. Their eyes radiating warmth and comfort where faces were hidden behind the surgical masks. He closed his eyes and feel asleep. When he awoke, he realized he was back on the 4th floor of his temporary home on the children’s wing. Prior to the surgery, he was seen by a group of doctors who were teaching him new ways to put his tongue and lips for making sounds. He was told to practice these movements all the time. They said it was necessary to see the effects of surgery. He made a promise to himself that he would try out this new way of speaking in the privacy of the bathroom. There, he would be the only one to hear his monkey talk. He would just smile wider the next time someone spoke to him.
The American doctors came early in the morning, going from bed to bed, asking if he was in pain, if he was eating, and when did he want to go home. When the last doctor left the room, he got up and locked himself in the bathroom. He looked in the mirror and smiled. At least he would have his smile to fall back on. He started by whispering his name. At first, he thought he heard no difference. He said his name a little louder. His name sounded as if it was someone else’s. Yet, he knew it was his. He could hear a difference. It was at that very moment that passive resignation grew into hope.
The more he said a sound the new way he was taught, the more it sounded like everyone else’s words. He smiled in the mirror and saw joy.
He came out of the bathroom, and walked back to the office where he was taught to say sounds. He knocked on the door.
It was at this moment that I opened the door and saw Juan Carlos standing in front of me, He stood taller, wearing a smile growing from ear to ear. I said “Hola”. He returned my greeting with one of his own, and asked me, “Do you want to hear me smile?” My surgery gave words to my smile!
In the next two days, Juan Carlos and I became very good friends, and he told me of the story I just related to you. His personal story, became mine, and now I trust it will become a personal story for all the doctors on this surgical mission to keep in their hearts and be reminded of how not only do we put smiles on a child’s face, we can hear the smile of a child who has found new hopes and dreams of being and sounding normal.
Healing the Children will continue to support and provide craniofacial speech services on every trip to Santa Marta, with the next trip scheduled in October 2011. Plans are underway to develop a craniofacial speech program in Lima, Peru.. If you want more information, contact Etoile LeBlanc at craniofacial@msn.com.