During my nursing career I have performed high-skill pediatric critical care with two small clients with spinal muscular atrophy. One client resided within a pediatric iron lung in the neuro intensive care unit where I was a staff member. One day this child coded, and life-saving measures failed. I am grateful that I was not working the day this lovely human being passed away.
The second client, was a small baby with a 0 (zero) Shiley tracheostomy tube receiving oxygen and high level critical care at home - within a shabby apartment in the Dallas area.
Spinal muscular atrophy is a rare disorder. So many things receive abundant funding because of massive PR machines. Spinal muscular atrophy does not fall in that category.
But where was the medical expertise to adequately diagnose? A stunning erroneous diagnosis of child abuse cast normal parents as monsters. One bad diagnosis. Two lives destroyed.
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