Stories of Lost Children
Cody, Our Son With a Muscle Myopathy
by Tracy Schmurr, Livermore, CA, U.S.A.
My husband and I tried for 2 years to get pregnant. After many prenatal appointments I kept telling the nurse that I couldn't feel him move. She just kept telling me he was probably moving when I was sleeping and didn't notice it. On my 39th week visit they found out that Cody was breach and stuck with a hyper extended leg. He was taken by C-Section on 12/21/04 and thats when they noticed that something wasn't right with our son Cody. He was having problems breathing and stayed in NICU for his first 18 days of life. He was born with Club Feet, Scoliosis and they weren't quite sure on his muscle weakness problems yet. We were so excited to be able to go home, even with his feeding tube through his nose, we didn't care what we had to do. We had many doctor appointments with specialists and blood tests done. After a month of being home we were sent back to the hospital because he got RSV. He was put on a respirator. Even though the doctors didn't think he'd ever get off the respirator, he did! He was so strong (even at only a month old). After being in the hospital for awhile we were finally able to go home again, this time for only a couple weeks when Cody started to sweat a lot. We found out that his muscle weakness was progressing and with his elevated diaphragm he was having a hard time with his oxygen levels. They did a Muscle Biopsy but they could only find that his Type 1 Muscle Fiber was atrophied and said he had a Muscle Myopathy. We tried doing a surgery that hopefully would help him breathe better on his own. He had his diaphragm plicated and was given a feeding tube in his stomach (he had a hard time swallowing due to the muscle weakness). The surgery went well and once again he fought and got off the respirator with the doctors in disbelief. We were just going to be discharged to go home and they checked his blood levels one last time and his CO2 levels were still increasing, which meant that he couldn't exhale the carbon dioxide from his lungs. The doctors gave us two choices; he'd have to live on a trachea until they didn't know how long, or we could take him to George Mark Children's Hospital in San Leandro CA. My husband and I had to decide the fate of our child. Knowing how much it upset Cody each time he was on the respirator, we decided to take him to George Mark's which is a children's hospice. Cody was 4 months and 3 weeks old. He lived with us there for 10 days and he just slowly fell asleep in our arms on May 13, 2005. We are so thankful we had a beautiful place to bring him to. He was a very happy baby and touched the hearts of so many people. There isn't a day that goes by that my husband and I don't feel the loss of our beautiful son. My husband and I are pregnant again and due June 20th, 2006. We were told we have a 1 in 3 chance of this son being born with the same problem but this time I can feel movement which keeps us very hopeful.
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