Babies who have spinal muscular atrophy (SMA) will have unique needs in order to make them more comfortable and help them enjoy their surroundings. We’ve put together a list of ways you can help your baby stay comfortable and be able to watch the world around them using information from SMA Support UK.
Babies with type 1 SMA tend to breathe using their diaphragm so they are best placed either laying their backs or sides as they develop in a semi-reclined seated position or sitting up supported so long as their chest doesn’t concertina (hunch up) and put pressure on the diaphragm. They shouldn’t be placed on their stomachs as this could impede breathing.
Changing their position regularly will stop them from getting too uncomfortable and stiff as well as allow them to experience different viewpoints.
If the infant is on their side, you will need to check that their shoulder and arm doesn’t become trapped and ensure their ears are not bent forwards. Babies laying on their backs may need their hips propped slightly so their legs don’t roll outwards. Your occupational therapist will be able to demonstrate the best way to do this.
As babies with SMA type 1 will have difficulty swallowing, you may need to manage their saliva and other secretions. Placing their head to one side will allow any dribble to flow down their face instead of down their throats, and you can place a soft cloth under their cheek to absorb any saliva. You may want to have a suction machine to help deal with excess saliva. Barrier creams or dribble rash creams can be applied to the face to prevent any soreness. Cough assist machines are available to help clear mucus from the lungs.