Adjustments for Children Living With SMA: How You’ll Help Your Newborn to 2-Year-Old Thrive

Nothing can really prepare you to have a baby. It’s even harder to feel ready when you find out your baby has a disabling genetic condition like spinal muscular atrophy (SMA). Caring for them means a massive lifestyle adjustment. But the more you understand SMA and the challenges it poses, the better support you can provide from day one.

Pediatric neurologist Alexandra Bonner, MD, shares the different ways you and your baby’s care team will promote their growth and development.

Key adjustments for living with SMA

In order to understand your role as an SMA caregiver, it’s important to know the common health hurdles babies with this chronic illness encounter as they make their way into toddlerdom.

The type of SMA your baby has will determine a lot about both the severity of their challenges and their long-term outlook. So do the types of treatments they receive and when.

Whatever their exact diagnosis may be, there’s a lot of reason to be hopeful. SMA treatments — most of which didn’t exist 10 or even five years ago — are prolonging children’s lives and ability to function.

But with any revolutionary treatment comes uncertainty.

“It’s really challenging to know exactly what long-term outcomes are going to look like,” Dr. Bonner says. “We hope that these therapies will allow your child’s clinical course to stabilize over time, but it’s too soon to know for sure if (and how) that will happen. In the meantime, we still need to support them as they grow and develop.”

Dr. Bonner shares some of the challenges children with SMA typically face — and the adjustments you and your baby’s support team will make to address them.

Respiratory and digestive needs

Your baby’s breathing and swallowing will be assessed as soon as they’re born. For some babies and toddlers living with SMA, these issues require long-term management.

“SMA is a disorder that affects the function of muscles. We use the muscles in our throats to swallow food. And we use the muscles in our chest and thorax to breathe,” Dr. Bonner explains.

Your kiddo’s care team will determine whether your baby is able to feed and swallow enough to gain weight and maintain their growth curve. If the answer is “no,” they may need to provide extra nutritional support.

It’s the same story for breathing. Like all babies, yours will be closely monitored to ensure they’re breathing comfortably enough to go home from the hospital. If they need respiratory support in the NICU (neonatal intensive care unit), pulmonary specialists will work quickly to decide how best to assist them.

SMA nutrition

What and how your baby eats depends on the kind of SMA they have and how it affects their digestion. There’s no one-size-fits-all plan. But here are a few common complications your provider will keep in mind as they craft a nutrition plan for your little one.

• Acid reflux. If your kid’s SMA impacts the muscles in their gastrointestinal tract, it could cause acid reflux. That increases your baby’s risk of accidentally inhaling their stomach contents (aspiration).
• Constipation. If poop doesn’t move efficiently through your kiddo’s bowels, it can lose moisture, leading to constipation.
• Gastroparesis. Children with SMA are prone to gastroparesis, a condition where food gets stuck in the stomach. In addition to nutritional concerns, gastroparesis can cause unpleasant symptoms like bloating, regurgitating undigested food and loss of appetite.
• Metabolic issues. Some children with SMA have trouble keeping their blood sugar up (hypoglycemia).
• Nutritional deficiencies. The American Journal of Managed Care reports that SMA can cause deficiencies in vitamin E, vitamin K, folate, vitamin D and calcium. Your provider may recommend supplements to prevent bone problems like osteoporosis.

Musculoskeletal support

When your baby has SMA, their motor neurons don’t communicate with their muscles, leading them to atrophy over time. That’s a problem because your muscles provide critical support to your skeletal system, including your joints and spine. Without that support, issues like scoliosis can develop.

“The core members of your child’s care team will monitor them for symptoms of musculoskeletal complications,” Dr. Bonner says. “But there’s usually a low threshold for bringing in physical medicine, rehabilitation and orthopaedics specialists. It’s important to intervene early to prevent long-term problems.”

Physical therapy

There are three main types of physical therapists your child may work with to ensure they’re as strong and independent as they can possibly be:

1. Physical therapists. Physical therapists are your baby’s first line of defense against weakening muscles. They’ll guide your child through stretches and exercises to improve their strength, balance and mobility. Physical therapy can also help reduce pain and instability.
2. Occupational therapists. An occupational therapist is a problem solver. They’ll help your child find safe, accessible ways to do important daily tasks as they grow up, like brushing their teeth or feeding themselves. They’ll also train your kiddo to use assistive devices.
3. Speech-language pathologists. If your child has speech and swallowing problems that don’t rise to the level of needing a feeding tube or communication device, they’ll work with a speech-language pathologist to strengthen the muscles they use to speak, chew and swallow food.

Assistive devices

Assistive technologies will be an essential part of your child’s SMA care plan. Some of those items will fall into the category of medical devices. These devices will address the SMA complications we’ve discussed here and more. Examples include:

• Standers
• Cough assist machines
• Food thickeners
• Bilevel positive airway pressure (BiPAP) machines
• Orthopaedic braces (orthoses)

Your child will also likely benefit from different kinds of adaptive equipment. These tools will allow them to participate in activities or complete daily tasks as they grow up. Here are some examples:

• Adaptive strollers
• Voice-operated lights
• Car beds
• Augmented and assistive communication (AAC) devices
• Feeder seats or adaptive eating utensils

Home modifications

Everybody modifies their home in preparation for a new baby. But if your baby has SMA, the changes being made tend to go beyond standard babyproofing. You’ll work with your child’s occupational therapist to decide what changes will be most helpful for your little one as they grow up. Common modifications include:

• Installing ramps
• Widening doorways
• Removing or relocating furniture
• Adjusting the height of counters and sinks
• Adding stair or wheelchair lifts

Final thoughts

You’ve probably heard the saying “It takes a village to raise a child.” As you embark on this SMA caregiving journey, you’re going to need a village as much as your child does. And that village is bigger than just your care team.

You’ll need the help and comfort of your friends and loved ones. You’ll need mental health support. And you’ll need to tap into the community that other SMA and neuromuscular disorder caregivers have built. Organizations like Cure SMA and the Muscular Dystrophy Association offer a wealth of information, experience and empathy that you can draw on as you adapt your life to help your baby thrive.

Together, you and your village will do what it takes to give your child a wonderful life.