This is a total self diagnosis but a few months ago on the SMA network (like facebook for SMA families) I saw a little boy with type 0. I had never heard of it before but this little boy sounded so much like Owen and Landry. I tried getting information from a doctor but never heard back. Today I thought about it again and googled it. This is what I found.
"Three types of SMA affect children before age one year. Type 0 is the most severe form of spinal muscular atrophy and begins before birth. Usually, the first symptom of type 0 is reduced movement of the fetus that is first seen between 30 and 36 weeks of the pregnancy. After birth, these newborns have little movement and have difficulties with swallowing and breathing."
After Owen was born and we were in Primary Children's NICU we got to answer question after question at least a dozen times for each doctor. I told each one of them, that my pregnancy was normal until about six weeks before I delivered. Most of them just blew it off as if I didn't know what a healthy baby felt like. In fact Owen's records are still wrong because I finally gave up the fight of trying to get them to change them.
Owen and Landry were both super active until the last, which I know can be normal but they slowed down before healthy babies do. Landry was so active that he had the cord wrapped around himself numerous times. One doctor said "that tells you he was an active baby" as we were trying to have hope that he would 'snap out of it' and be healthy.
I know many of you wonder, as we do, about Owen and Landry so I thought I would share the information I found. I will keep you posted if I find anything more.
I remember the days that I realized the baby inside was not moving.
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| Owen |
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| Landry |
