“I have beaten the odds!”
Morgan McCormick, Trisomy 18, Partial Trisomy 18 / 9- translocation, 7/14/97
My name is Morgan and I was born with trisomy 18 (Edwards syndrome.) Actually, it is a partial trisomy 18, which means that all of the cells in my body have part of an extra chromosome 18. I am also missing a small segment of chromosome 9. I have an unbalanced chromosome translocation that caused this to happen. When I was born the drs. didn’t think I would make it to the end of the first week of my 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. After 6 weeks in the NICU I was able to come home. I have beaten the odds! Life isn’t always easy, but I am learning new things all the time. 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 it will give them hope to not give up. Here is a little bit more about me and the challenges I have faced so far: Over the years I have been going to physical, occupational, and speech therapies. They have helped me a lot. Even though I do not walk I can move around my environment in a walker, called a gait trainer. I use a wheel chair for mobility. I eat orally now, although as an infant I had a g-tube for all my feedings as I wouldn’t take a bottle of any kind. At 2 1/2 yrs. of age the g-tube was removed as I could now eat pureed foods and drink my milk from a sippy cup. I was diagnosed with a severe hearing loss in both ears. I wore hearing aids fromt the time I was 6 mos. until I was 3 1/2 yrs. old. At that time testing showed I really did not have much loss at all. At 6 yrs. old I started having seizures. I was put on meds. and they were completely under control for 18 mos.
I have had a few surgeries in my lifetime. The first was when I was only 10 days old. I was born with esophageal atresia and a t.e. fistula. This means my stomach was not connected to my esophagus. I had inguinal hernia repair at 8 wks. old. Then I was good for a very long time. I hardly even caught colds. I had surgery again at 3 yrs. old to correct strabismus (crossed eyes). They had to do the surgery again at 5 yrs. to get them straightened out even better. I had my esophagus stretched several times over the yrs., as it would tend to get narrow at the site of my surgery when I grew. Last year, at the age of 8 yrs. old, was the first time I was very, very ill. I had pnuemonia 3 times that winter. My body had become toxic from one of the seizure meds. I was taking and I went through withdrawal when trying to wean off of them. I was found to have a low functioning thyroid gland, hypothyroidism, and put on a med. to take care of that. Finally, I had surgery again in March 2006 and a g-tube was placed again along with a fundoplication. It was found that my pnuemonias were probably caused by reflux aspiration. A ph probe found that I had acid in my esophagus 70% of the time. I am no longer able to drink thin liquids due to the risk of aspiration, that is why I needed the g-tube again. I don’t have to worry about the reflux any more as the fundoplication means that I will no longer have any reflux. I am still able to eat mashed and softened foods orally and my mom found me a milk that is thickened to the consistency of honey that I can drink. So, after a rough 2006 I have been healthy and happy again.