José Luis' Story
José Luis is a 5 year old boy who lives in Cumbayá, a suburb of Quito. José Luis was born with respiratory distress due to bilateral vocal fold paralysis for which he was intubated and reintubated many times during his first few months of life. He suffered many hypoxic episodes during this time and he now lives with both cerebral palsy and a tracheotomy.
Bernardo Tamayo, his father, shared that tracheotomies are complicated in Quito for both geographic and social reasons. Quito is cool, dry and at an altitude of nearly 10,000 feet, there is relatively less oxygen. There is increased need for suctioning the tracheotomy and when José Luis is sick with an upper respiratory virus, he cannot live at home. His mother takes him to stay in Guayaquil, a humid, sea level city in the coastal region. Social challenges are abundant for a child with a tracheotomy in Ecuador. Bernardo described how people simply stare at José Luis and that they “look horrified.” Having spent time studying in the US, Bernardo recognizes a major difference in the Ecuadorian outlook for disabled people and that there is no awareness for this population of children. Challenges at home abound for the Tamayo family. José Luis cannot talk and communicates by pointing and uttering the sounds that he can form. He has the mental capacity to understand speech but is unable to coordinate his muscles to speak intelligibly. This is a point of frustration for José Luis, his twin brother and his parents. His brother prays at mass for the tracheotomy to be removed.
José Luis underwent a comprehensive clinic and operating room evaluation of his airway. His parents felt that for the first time since José was born that they understood what was wrong with José and what could possibly be done in the future. When asked to describe what the day of surgery was like for their family, Bernardo stated that “what happened here today for us was magical” and that they were “1,000% fulfilled.” Our team’s evaluation gave Bernardo and his wife hope for the future for José Luis and a definitive plan for his airway management.
José Luis is doing well. He is growing and thriving. Both of his vocal folds remain immobile and our plan is to open one of his vocal folds this coming year in the hopes to be able to safely remove his tracheostomy in the near future.
José Luis had a sleep study which showed some sleep apnea, so on our return trip to Ecuador, we removed his adenoids. He did well after surgery and we hope that we might be able to take his tracheostomy tube out soon.
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