While in utero Andrew suddenly stopped moving and using his muscles. When he was born via c-section since he was breech, he was immediately intubated and brought to the NICU where he spent the first 103 days of his life.
Symptoms:
Neuromuscular - Extremely low muscle tone, does not swallow & barely moves, Trached & Vented full time, G-tube feeds, frequent suctioning, contractures of the wrist joints and no knee, ankle or elbow joints, hip displasia
Testing/Diagnosis:
Andrew has had numerous blood and genetic tests done. Doctors wanted to do a muscle biopsy during his g-tube surgery, but there was not enough muscle to take.
Treatment:
PT, OT, Speech
Resources:
Rhode Island Parent Information Network, Hasbro VIP Clinic
Personal Story:
When Andrew was born 5 weeks early, we did not know what to expect. There was a brief moment when we locked eyes before they whisked him away to be intubated and brought to the NICU. Andrew went through more in his 3 1/2 month NICU stay than most people go through their whole lives. He was poked, prodded, head shaved, got sicker, was extubated twice - on accident, had both his arms fractured & had 5 surgeries in 1 day. Once he was trached, however, he began to thrive! He would communicate using his eyes since he made no sounds. I trained daily to learn how to care for him at home and eventually that day came. Andrew has had some ups and downs since being home, but nothing too severe. He is now almost 5, a big brother and in Pre-K at school. He is working with a computerized eye gaze device in order to communicate. He still has extremely limited movements, but can tell you a story with his eyes. He is still undiagnosed, but shows us daily how he knows more than we can imagine and it is only getting better!
Contributed by MOM Tara Townsend
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