Infantile spinal muscular atrophy type I: when to get help
Go through these in order and stop at the first one that applies. If you are reading this for someone else, answer for them.
1
Is any of this happening now?
Call 911
Call emergency services now if your baby:
Is struggling severely to breathe or stops breathing
Has blue, grey, or unusually pale lips or skin
Is choking and cannot breathe, cry, or cough
Is very difficult to wake or becomes unresponsive
Has a sudden major decline in breathing or alertness
Other emergency signs, for anyone
Someone who is struggling to breathe, gasping, choking, or cannot get words out
Someone who has chest pain, tightness or pressure lasting more than a few minutes
Someone who has sudden weakness or drooping on one side of the face or body, slurred speech, or sudden confusion
Someone who is unconscious, or cannot be woken
Someone who is bleeding heavily and it will not stop with firm pressure
Someone who has had a seizure that will not stop, or does not wake up afterwards
Someone who has lips or skin that look pale, blue, grey or blotchy
Someone who you believe has taken an overdose or swallowed something poisonous
2
Is any of this happening?
Be seen today
Seek urgent same-day medical advice for increased work of breathing, a much weaker cough, repeated choking, fever with breathing changes, unusual sleepiness, or signs of dehydration such as fewer wet nappies.
Babies with spinal muscular atrophy can worsen quickly during respiratory infections.
Contact the specialist team promptly if feeding takes much longer, weight gain slows, coughing occurs during feeds, sleep becomes disturbed by breathing, or movement skills decrease.
3
Does any of this apply?
Book an appointment
Routine follow-up is used to review treatment response, growth, swallowing, respiratory support, equipment, and movement.
New concerns do not need to wait until the next scheduled appointment.
Every sign above is quoted from the sofidex article on Infantile spinal muscular atrophy type I. If you are not sure, err upward — it is always reasonable to be checked.