Growing Up With Cleft Issues


My daughter, Kaylee, was born with a cleft lip and palate. Because of that, she has been subjected to more medical visits than some people face in a life time. Last week was her regularly scheduled appointment for “clinic” – a time when she gets to see the entire cleft team in one day.

Our day begins early, with her scheduled to check in at 8:00 AM. Once all the paperwork is completed, we are directed down the hall where we are greeted by the medical photographer. He takes a series of photos that zoom in on her facial structure; profile, full on, close ups of her nose, teeth, even the roof of her mouth. (Personally I would have left after that, forget sticking around for the rest of clinic!) Then we are sent to a waiting room.

Each clinic usually includes anywhere from 10-12 patients. Each person has their name listed on a white board with the different specialties graphed out in columns. As each child is evaluated by a specialist, they receive a check mark by their name in that column. It is a very simple and efficient method of ensuring that every patient is seen by each group. To ease their discomfort and fear, there are volunteers who pay a visit to the hospital during each clinic day. On any given day, you might see clowns, grandmas with treats, service dogs, and there is always someone there to pass out gifts for each patient! The attention and care given to these children is excellent.

During the visit Kaylee is evaluated by a nurse, speech therapist, ENT doctor, audiologist, social worker, psychiatrist, dentist, orthodontist, plastic surgeon, and orthopedic surgeon. She answers personal questions about her school work, friends, and about bullying – does she encounter it in her school? She is asked to make decisions about her care – is she happy with the way her orthodontics are progressing? Does she want to make any changes to her lip? Is she happy with her nose? When she looks in the mirror each morning, is she happy with the person she sees looking back at her?

Once each team of doctors has seen Kaylee, they confer with each other to determine the plan of action for the upcoming year. When they are finished with their conference, we are called into the room, where the entire team sits around a table and outlines their recommendations while fielding any questions or concerns we might have. Although Kaylee has indicated that this is her least favorite part of the entire visit (she feels very intimidated by it) she always handles it with stunning maturity. Some days it is hard to believe that she is only (barely) 12 when she is interacting with her team of doctors.

But that is only because they don’t know the little girl I do…. This year she has decided that she is not interested in any type of cosmetic surgery to her nose or lip. Although she had thought about it in the past, (and may consider it in another year or two) this year she has discovered a unique talent. Kaylee can wiggle her nose! Who knows? If they were to do surgery to correct some of the issues brought on by her cleft, they might leave her unable to perform such an amazing trick! And to a 12 year old, that could be devastating. It is good to know that she isn’t growing up too fast. (And that she can change her mind at any time in the future if she likes.) I think her nose is perfect too, just the way it is!


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