My name is Morgan and I want to tell you a little bit about myself. I was born with trisomy 18, actually a partial trisomy 18. That means that all the cells in my body have part of an extra chromosome 18. I have an unbalanced chromosome translocation that caused this to happen. I am also missing a small segment of chromosome 9. When I was born I had esophageal atresia and a t.e. fistula. This means my esophagus was not connected to my stomach. I also had sepsis (a fever of unknown origin) and was severely jaundiced. Lots of kids who are born with trisomy 18 have heart and renal problems, luckily I didn't. The drs. still didn't think I would make it to the end of my first week of life. You see, trisomy 18 is very often a fatal disorder. The statistics say that 90% of babies born with it will not make it to their first birthday. When I was 10 days old the drs. decided to repair my esophagus. I came through the surgery with flying colors. They also placed a g-tube (a button tube from the surface of my body directly into my stomach) so that it would be easier for mommy and daddy to feed me. Unfortunately, I developed a post surgical problem called chylothorax (it is a hole in the thoracic duct.) This went undetected for over a week and I began to have breathing problems. The drs. told my mommy and daddy that the end was probably near, but a very good radiologist discovered that there was fluid in my chest cavity that was causing the breathing problems and the drs. were able to fix me up again. Finally, after 6 wks. in the NICU I was able to come home. I had beaten the odds, at least for the time being. Once at home I continued to thrive. Life isn't always easy for the three of us, but mommy and daddy love me so it doesn't matter that much. I am learning new things all the time, it just takes me longer. What other people take for granted is harder for me to do. I hope I can help other kids like me. If their parents read this maybe I will be able to give them courage not to give up. |