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What is SMA?

For Parents

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Each infant stricken with SMA, Type I is different.   We have included this only for your information.  All medical decisions should be made in conjunction with your doctor.



Wyatt, being a typical baby, did quite a lot of drooling.  At times this was hard for him to manage.  Using a nasal aspirator bulb (usually given to parents in the hospital with newborns) or a suction machine we were able to gently remove the excess secretions from his mouth.  Remember that "gentle" is the key word here.   Never go beyond 2/3 back in the mouth.  We really liked the portable suction machine and kept one upstairs and one downstairs.  The portability enabled Wyatt to continue with activities he loved like traveling and long walks.  Be sure to specify and request a "pediatric Yankauer" suction tip when ordering your equipment.   It is more flexible and much smaller than the standard.



Wyatt started receiving nebulizer treatments soon after his diagnosis to help maintain clear open airways.  This compact device turned air into a cool medicated mist which Wyatt inhaled as he breathed naturally.  This can be done with a mask worn over the nose and mouth or using the t-tube as blow by.  Wyatt preferred the "blow by" because he wasn't too keen on the mask confining his face and his view of the world.



The use of a monitor during your child's journey is an extremely personal one.   After Wyatt's first hospital visit we decided to use a Pulse Oximeter in our home.   This machine was non-invasive, but monitored Wyatt's oxygen levels and heart rate.   We could set the limits and the machine would alarm when those limits were reached.   This allowed us increased piece of mind to move about the room without constantly hovering and checking his breathing for ourselves.  At times when we were right with him we turned it off.  Consider your options and do what feels right for you.