Nineteen years ago, I was introduced to the world of Marfan's Syndrome. My father died as a result of surgery to repair his heart. He was 36 years old. Until than, I knew nothing about Marfan's. As a result of my father's death, all of his children were checked. I was the only one to be diagnosed with it. When I saw the doctor who diagnosed me as being effected, I was told that I should seriously consider not having children and if I do that I should have them all by the time I was 29-30. I really was in the dark about Marfan's and the possible complications involved. I was just told that this was the reason I am tall and skinny, and that my heart might be effected. The only thing they did to check my heart was take an x-ray. How things have changed! I wear glasses but my lenses are still in place. I don't really have many other effects. I am only 5'6'' tall although as a child I was always the tallest in school! I was blessed with three children. When I was pregnant with my first, I got an echo for the first time. I was told that I was normal, but because of the Marfan's, I could have an aneurysm at anytime. Special precautions were taken at the delivery so that I would not experience the stress of labor. But, I was allowed to experience the stress of delivery! My daughter is now eleven and doesn't have Marfan's. With my second pregnancy, I was given another echo. The doctor's once again told me I was normal and warned me that I could have an aneurysm. They also scared me into having my tubes tied. They told me I would died if I had more children. I was 23. This delivery went the same as the first. My son is now nine and does have Marfan's. He is 5'1" tall and has a problem with his right ankle and is flat footed. He is being followed by a cardiologist and so far has no problems with his heart or his eyes. After he was born, I had another echo done but this time, it was in a clinic that knew about Marfan's and what to look for. I was told that I have mitral valve prolapse and my aortic root had dilated slightly. The next time I became pregnant, I went back down to the same clinic. The doctor told me to have an abortion. I was six months pregnant with a baby that defied all odds and I knew that he was a gift from God. I refused to have the abortion. I once again had an echo and was told that my dilation had not changed from the last time I had one two years earlier. I gave birth with the total experience of labor this time and not delivery. My son is now seven and has also been diagnosed with Marfan's. He doesn't have any problems with his eyes, heart or feet, although he is also under the care of a cardiologist. Until recently, I was not really aware of the total spectrum of afflictions involved with Marfan's. I have never even met another person with it. Other than my father, we have been blessed with the mildness of our affliction. (I feel that if he were alive now experiencing the same problems, he would not have had the same problems. Things have progressed so much in the past 20 years!)This brings me to another issue. I am not sure how to react with others who do have a harder road to travel because of it. I hate to even tell them that we are so blessed for fear that I might come across as bragging. Just last year, I once again had my echo. It had been 7 years since I was at the clinic. I was told that there has been a slight change in my dilation, but I was in no danger yet. I was prescribed a beta-blocker for maintenance but I have been unable to take it because of the side effects. I will be seeing the cardiologist again in June. Hopefully they can find a beta-blocker that doesn't make me sick. If there is anyone else who has experienced beta-blockers and over come the problems associated with them, I would love to hear from you.You can contact me through the address below.
