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Karyn

Created by Elizabeth Edmonds

Karyn

Karyn's Story: Karyn was born 5/8/72 weighing in at 4 lbs. 9 oz. It was thought that she was premature and that we had calculated the due date wrong but one week later she was rushed to our state's teaching hospital with an enlarged heart and elevated heart rate. At the time it was thought that she had Transposition of the Great Vessels but a cardiac catheterization revealed ASD/VSD and Peyton Ductus Arteriousus. It would be necessary to get her weight to 7 lbs. to perform heart surgery but after a month she had not reached that weight and her heart was not causing problems so we took her home. Within a week the Peyton Ductus had closed and the ASD/VSD began to decrease in size. For the first 5 years we assumed that the cardiac issues, late talking and hearing problems were attributable to the premature birth but at age 5 we found out differently. It was during a routing exam by an intern at our teaching hospital when I happened to mention that the little finger on one hand was smaller than the little finger on the other. He became very excited and ran to get the head of the Genetics Department. They quickly did a skin punch chromosome test and about 4 weeks later came back with the diagnosis of Mosaic Trisomy 18. I remember sitting in that large room with my husband surrounded by a swarm of doctors in white lab coats as they gave me the diagnosis. I had many questions and they had no answers. I asked, "what do we do now?" The head of Genetics asked, "what have you been doing up until now?" I said, "planting my foot behind and pushing as hard as I can but always with a back-up plan." "Looks like it's working," he replied. And that's what we've done for well over 40 years. Karyn has defied the odds, learning to read and write at about the 3rd grade level, and graduating from the alternative school and getting job training. She has worked several jobs over the years, housekeeping for a large hotel chain, working at the cat intake center for the Animal Shelter, working for a large retail pharmacy pulling expired merchandise, volunteering at an assisted living center, and working with special needs children at a local school. She volunteered in a special needs classroom where she got Volunteer of the Month once. With every accomplishment I'm reminded of the local experts who told me once "she will never be independent. She will never read and write. She will never even learn to brush her teeth." I realize now that it was primarily due to the fact that so little was known at the time about Trisomy 18 and armed with little or no knowledge they painted the worst scenario for us, but we refused to accept it. Over the years she has developed some issues that tend to occur on a more natural timeline for the rest of us. For instance, menopause came early and she was through it by her mid 30's and she has had hip replacement for a degenerative hip. She recovered phenomenally well and now swims 2-3 times a day, 2 days a week. She schedules her transportation and rides to and from on her own. Today Karyn lives, by choice, in a group home with 5 other developmentally disabled ladies. She is active, happy, productive and has a wonderful social life. Karyn has a unique perspective on life at times which provides us and her two sisters with a lot of comic relief. She is compassionate and caring and has a large network of friends many of whom are women from the church whose children are grown and gone. They love to take her with them to see "chick flicks" and Disney movies and eat out. I don't know if we would have done anything differently had we known at birth that Karyn was Mosaic Trisomy 18 particularly since she was only the second infant to go through our teaching hospital and so there was no data. We agreed to let them keep her medical file for future students to study and we are an open book if anyone asks questions. In retrospect, we realize how fortunate we are that we still have Karyn with us and how fortunate we are that we were encouraged to push her to accomplish goals. Going forward, there is a need for more research and particularly resources for parents where they can ask questions and get real answers. We, parents of Trisomy children, can provide a lot of answers mainly centered around what has worked and not worked for our children. For those of you who have been touched by Trisomy 18 my heart goes out to you because I realize how lucky we have been with Karyn and what a miracle she is. My hope is to one day write a book that will help others to look for the possible and not focus on the impossible. Until then, Karyn is here, I am here and we are an open book.

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