Michelle's Story
My husband and I thought I had a normal
pregnancy, We did notice she did not move in the womb very much, but it was my first
pregnancy. February 18,1998 Michelle Faye Justice came into this world at 6:30 a.m.
weighing 8 lbs. and 19 inches long. She had a very weak cry, we thought she was just
a quiet baby. Around 1 1/2 months my mother, Michelle's Grandma, noticed the movements of
Michelle were not good-she didn't even try to hold her head up, nor would she jump to loud
noises, so at her 2 month well baby check-up, Dr. Byrum, her pediatrician noticed it too
and he sent us to a neurologist that day, Dr. Edgar, and the neurologist drew blood and
told us a little about Infantile Progressive Spinal Muscular Atrophy, SMA type 1, and in 2
weeks we were given the terrible news the test came back positive, and we were told she
would not live to see her 2nd B-day. We were shocked we had never heard of this
terrible disease. In June when Michelle was 4 months old, she was hospitalized for
pneumonia, she also got her g-tube put in because her swallowing reflex did not work and
she had a nissan. 2 weeks later we went home. She did fine after that
pneumonia for awhile. In Sept. we knew she had pneumonia again, but we thought
everything would be fine because she was not as fussy as she was with her last pneumonia
she was very happy. Her 2nd day in the hospital she started struggling, her heart
rate stayed high and they had to give her a little oxygen,so we were sent to Arkansas
Children's hospital in the PICU, and we did not want her on a ventilator so they put us in
a regular room on comfort care. She stopped breathing for the first time on Sept.6
and she started breathing on her own again and she had a few of these episodes. on
Sept.8 night she seemed to be doing a lot better her heart rate was down and we thought
everything would be okay. Wednesday, September 9,1998 she woke up very fussy and a
very high heart rate again, and they told us they expected her to go into a coma and then
pass away, 1 hour later she passed away in my arms.
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