Dakota Killough
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Dakota was born on Decemeber 23, 1994. Shortly after birth Dakota had problems breathing and the doctors tried to intubate him. He was transferred to Children's Medical Center of Dallas and an emergency airway was inserted. Doctors found that Dakota had Laryngeal atresia. (The trachea was not completely formed and air could not reach his lungs.) Fortunately, Dakota had a TE fistula which allowed him to take in enough oxygen through his esphogus to survive until the emergency airway was inserted. Laryngeal atresia is usually a fatal birth defect unless a tracheostomy is performed in the delivery room or if the child has a TE fistula. Dakota's tracheostomy was performed 4 days later. Dakota also had an imperforated anus (required a colostomy for a year), VSD, ASD, and microgastria. His heart defects were corrected when he was 3 months old.
Dakota's stomach is very small because of the microgastria. A gastrostomy tube was placed and drip feedings were tried. Since g-tube feedings were unsuccessful, a jejunal feeding tube replaced the g-tube. He started out on slow drip feedings 24 hrs a day. This has now progressed to only 8 hrs a day. He is currently able to eat baby food and is starting on table food.
Because of the laryngeal atresia, Dakota can not vocalize at all. The only sounds he can make are clicking noises with his tongue. Speaking valves will not work for him. He currently communicates using sign language and a Dynamyte Augmentative Communication Device.
Dakota is a very active child who loves people, entertaining others, and of course playing with his toys. He doesn't let his trach slow him down.
We would like to talk to other children, parents, or family members about children with trachs, especially those who have permanent or long term trachs.
- Update - February 2000
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Dakota has made a lot of progress over the last few years. His biggest accomplishment was getting his feeding tube removed in 1999. This was a huge step from being tube fed 24 hours a day for several months at birth. He has even stopped drinking his special high calorie formula/juice. He now eats everything without problems. This would not have been possible without the help of his speech therapist. With many hours of therapy and encouragement, Dakota was able to learn to chew and swallow foods of all textures. Since Dakota's j-tube was removed, he has gained weight and grown more than he ever did in the past. He is now average for his age.
His trach status has not really changed. His trach is permanent unless a medical procedure is developed in the future. Dakota has learned to suction himself with supervision and helps change his trach. Dakota still cannot vocalize normally due to laryngeal atresia. He has taught himself Buccal speech which sounds like Donald Duck. He does this by trapping air in his cheeks and forms words. He discovered this on his own and loves to talk and sing. He works hard to be understood by others. He spends a lot of time singing and imitating Garth Brooks, his favorite singer. Dakota is perfecting his Buccal speech and will soon start learning Esophageal speech. We are hopeful that he will be able to master this so he will be easier to understand and also have a more normal voice. Dakota also uses sign language to communicate. With the sign language and Buccal speech, he can communicate quiet well. His sign language vocabulary has passed 500 signs and he is now signing sentences. Every day he learns new words at school. He attends pre-kindergarten, with a trained aide, in a regular class. For 20 minutes each day, he works one on one with a deaf Ed teacher to learn and improve his signing. He signs so fast that we often have to tell him to slow down. Now, we just need to start taking classes so we can keep up with him.
Dakota continues to be a happy and well adjusted boy. He loves life and nothing seems to bother him. His attitude about everything makes all his medical needs seem unimportant. He doesn't see or feel that he is different from his friends at school, family members and others. In fact, he doesn't like it if we tell people he can't talk or vocalize. He says he can talk and because of this attitude, he has discovered a way to "talk."
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- You can e-mail us at threekillos@aol.com.
David and Kelly Killough
