8 Tips for Keeping Babies With SMA Comfortable

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.

Positioning
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.

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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.

MORE: Technology helps a young girl with SMA to experience preschool from home.

Managing Saliva
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.

MORE: Find out how a cough assist machine works. 

Temperature
Laying a baby on a sheepskin blanket will help to keep them warm and are very soft and comfortable, but may be too warm in the summer months. SMA babies can often have hot flushed faces but still have cold hands and feet. A digital thermometer will help you to keep track of your baby’s temperature.

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Dressing
Loose, thin layers are best so that you can add or take off layers to keep your baby at a comfortable temperature. The fewer buttons, the better and they should be at the front of the garments, not the back. Look for clothes with wide open necks.

Sleeping bags can offer additional warmth when out and about and enough room to easily get in and out of.

MORE: Right-to-try law helps baby with SMA in Minnesota.

Movement
Work with your healthcare team to come up with a series of movement exercises that will help keep your baby from getting too stiff. These can be fun for both you and the child.

Place toys in a position where they will need to move to reach them. Older babies can be laid on their sides so they can bring their hands together easily to take toys from you.

MORE: Seven ways that physical therapy and rehabilitation can help SMA patients.

Going Out
Taking your baby out in their stroller will be an enjoyable experience if they can see both you and the world around them. You will need a specialized buggy where the baby can lay flat but is also strong enough to support a suction machine and oxygen tank. Your baby can either lay flat or on their side with their backs supported by a rolled up blanket or foam wedges. Some babies may be able to sit supported upright in a buggy.

Most babies with SMA will need a car bed or harness to be used across the back seat, as opposed to a regular baby car seat, so they can be transported while laying flat. Some babies may be able to use a normal rear-facing car seat that reclines.

MORE: Find out about 11 different function and mobility aids available for children with SMA.

Bath Time
Bath times can be great fun and the warm water allows babies with SMA to move a little more freely which is great for exercising their joints. Invest in a bath support that allows you to have your hands free for washing and playing with your child. Some babies may get upset at bath times. If that’s the case, feed the baby after the bath as a full stomach may contribute towards being uncomfortable. If they’re fussy, try to keep bathtime as brief as possible.

MORE: SMA patient gets his wish of a roll-in shower.

Sleeping
You may want to have the infant in the same bedroom as you so that you can easily check on them throughout the night. The room needs to be at an ambient temperature and a humidifier may help to create a better environment. If your child coughs a lot at night you may need to open a window to provide more air circulation, but make sure the baby isn’t in a draft.

Have a few different sheets and mattress protectors as these will get damp quickly and need changing daily. Memory foam mattresses may provide more comfort than regular mattresses.

MORE: How to handle breathing difficulties in children with spinal muscular atrophy.

SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.