Bringing Home a Baby Diagnosed with SMA: Here’s What to Know

SMA is a genetic neuromuscular disorder that affects about 10,000 people in the United States, according to the Muscular Dystrophy Association (MDA).

SMA impacts the nerves of the spine, which leads to muscle weakness and atrophy. It can affect your baby’s ability to do various activities, from moving to breathing and swallowing.

Each child is different, and their experiences may vary based on the type and severity of SMA they’re diagnosed with. Your doctor won’t be able to diagnose the type of SMA your baby has or determine its severity just yet.

With the most common form of SMA, symptoms usually start to show up once a baby is 6 months old. Other types of SMA may not show symptoms until later.

Many babies diagnosed with SMA won’t meet standard developmental milestones. That doesn’t mean they won’t ever be able to accomplish these skills. It just may take more time.

Work with your baby’s SMA care team to monitor your child’s progress and follow up with any concerns you may have.

Your doctor can help you put together a healthcare team to address your baby’s specific needs. As your baby grows and develops, their SMA care team may grow to include some or all of the following pediatric specialists:

• neurologist
• pulmonologist
• orthopedist
• gastroenterologist
• dietitian
• speech-language pathologist
• physical therapist
• occupational therapist
• respiratory therapist
• social worker

You’re also one of the most important members of your baby’s care team. You know your baby best and can advocate for what they need.

Together, you can work with your baby’s care team to come up with a tailored treatment and management plan that helps your baby thrive.

While there’s no cure for SMA, treatment can help slow disease progression and manage symptoms.

Here’s what you should know about your baby and SMA.

With SMA, weak muscles may make it hard for your baby to gain neck strength. Your baby may not be able to turn their head toward sound or hold up their head without support. SMA may also make it difficult for your baby to control their head movements.

Work with a physical therapist or occupational therapist to develop strategies that can help your baby gain neck strength.

A baby with SMA may move very little or have trouble lifting things. Their limbs may be weak and appear floppy. As a result, they may fall behind on developmental milestones such as:

• making smooth movements with their arms and legs
• pushing themselves up when lying on their tummy
• pushing down on their legs when their feet are on a hard surface
• holding a toy and shaking it

Ask your baby’s physical or occupational therapist about exercises to help your baby strengthen the muscles of the neck and trunk.

SMA can make skills like rolling over and sitting up challenging for your baby. They may have trouble hitting developmental milestones like:

• rolling over from tummy to back
• rolling over from back to tummy
• sitting up without support

If your baby isn’t able to change positions on their own, you can help them. This can help keep their joints from getting stiff while stimulating curiosity about their surroundings.

When your baby is awake, you can help with positioning. When positioning your baby on their side, use a rolled-up blanket to support their back. When positioning your baby on their back, use a rolled-up blanket on either side of their hips to keep their legs from flopping outward.

Always place your baby on its back for sleep. Don’t use blankets in the crib unless otherwise advised by your baby’s pediatrician.

Work with your baby’s physical or occupational therapist on positioning strategies.

A baby with SMA may have trouble with supporting their weight on their legs, rocking back and forth, and crawling.

As a result, they may not learn support their weight to crawl or walk on the same timeline as other kids their age. If your baby can’t move around well, it’s a good idea to help them change positions frequently.

In time, a wheelchair or other assistive devices can help your child get around independently. Home modifications such as support bars and a wheelchair ramp can also help. Work with a physical and occupational therapist to develop a tailored plan to help your child become mobile.

Some children with SMA have trouble eating due to weak sucking action and swallowing difficulties. If your child isn’t eating well, isn’t gaining weight, or is losing weight, speak with your care team right away.

You may need to work with a gastroenterologist, nutritionist, or speech-language pathologist. These specialists can assess your baby’s needs and abilities to develop a plan that gets your child the nutrients they need. In some cases, a feeding tube can help provide vital nutrients for your child.

Some babies with SMA are particularly dependent on their diaphragm muscles to breathe. Weak muscles can make it difficult for your baby to swallow saliva, cough, and clear mucus from the lungs.

Placing your baby on a firm, flat surface can help ensure their ability to take deep breaths.

Poor air quality can make matters worse. According to Spinal Muscular Atrophy UK, exposure to secondhand smoke, in particular, may increase the risk of serious respiratory infection in children with SMA.

Work with your baby’s healthcare team to develop a plan for:

• keeping your baby’s airway clear
• supporting breathing
• preventing and minimizing the effects of respiratory infections such as cold, flu, or COVID-19
• what to do in an emergency

If your baby spends most of their time in one spot or has a limited range of positions, they’re at an increased risk of developing pressure sores. Redness and tenderness are signs that pressure sores are forming.

Depending on where the sores form, your doctor can recommend alternate ways of positioning your child. Repositioning your baby regularly can help prevent pressure sores.

With SMA, over time, weak back muscles can lead to a curved spine (scoliosis). Scoliosis may develop in childhood and can make it more difficult for your child to control their head, maintain positioning, and move their limbs. It can also interfere with breathing.

Early treatment for scoliosis can help prevent it from worsening.

SMA doesn’t affect brain development or cognitive ability. Many children living with SMA do very well academically. It’s important to encourage your child and advocate for a stimulating environment in which to learn and interact with others.

Your child may be eligible for services through your state’s early intervention program and under the Americans with Disabilities Act (ADA).

Taking care of a baby who has SMA can be challenging. Make sure you find time to tend to your own physical and mental health, too.

Your baby’s care team may be able to recommend local support groups or other ways to connect to others who understand what you’re going through. Check out the MDA’s resources for caregivers page and reach out for help when you need it.

SMA affects the nerves of the spine and can lead to severe muscle weakness and atrophy. It can impact your baby’s ability to do various activities independently, from moving to breathing and swallowing.

The prognosis for babies with SMA varies based on the type and severity. While there’s no cure for SMA, newer treatments options can help manage symptoms, slow disease progression, and improve life expectancy and overall quality of life.