Caring for a Child 2 and Under With Spinal Muscular Atrophy

There’s nothing easy about caring for a child under 2. It can be even more stressful when they have a disabling chronic condition like spinal muscular atrophy (SMA). The all-encompassing nature of the work involved in raising a baby with this genetic condition can quickly become overwhelming.

But you don’t have to do that work alone. Pediatric neurologist Alexandra Bonner, MD, explains that people and organizations are waiting in the wings to help. Dr. Bonner provides some pointers to help you provide the best possible care for your kid.

Tips for SMA caregivers

If your baby’s diagnosis was the first time you heard about SMA — or if this is your first experience caring for someone with a disability — you might not know who to turn to for assistance. Heck, you may not even know the right questions to ask!

Rest assured: Your care team does know. And they can get you plugged into the networks that will help you help your child.

Connect with your kid’s care team

Children with SMA often receive wraparound care to ensure all of their needs are met. Your baby will likely grow up working with lots of different specialists, including:

• Neurologists
• Physical therapists
• Occupational therapists
• Speech-language pathologists
• Pulmonologists
• Gastroenterologists
• Dietitians
• Orthopaedists
• Social workers

Think of your kiddo’s caregivers as a football team. The players all have their own roles and come on and off the field as needed. One person serves as the designated leader, or quarterback. They communicate with and coordinate the rest of the team’s actions.

In an SMA care team, the neurologist is that quarterback.

“The neurologist understands the disease process as a whole,” Dr. Bonner explains. “They’re the ones who take you through additional genetic testing and help you understand your baby’s diagnosis and prognosis.”

It’s your neurologist’s job to know the different available SMA treatments, as well as any treatments currently in development. And if there’s a promising drug in clinical trials, they’ll help your child get enrolled.

Your baby’s neurologist will make decisions based on your child’s healthcare needs. But they’re also going to account for your needs. So, having an open, honest relationship is key.

“Sometimes, caregivers want everything all at once,” Dr. Bonner notes. “Others prefer going one step at a time. Tell your provider when you’re feeling overwhelmed. Instead of putting in 10 referrals at one time, they can always say ‘Let’s do one referral today and discuss the others next time, since they aren’t urgent.’”

It may feel like there are a lot of cooks in the kitchen. But in the long term, having a care team supporting your kid makes your life less complicated. And it frees you up to manage other elements of their care. Dr. Bonner breaks down a few of them.

Monitor your baby’s cognitive development

Babies and toddlers with severe forms of SMA are living longer than they used to. That means we’re encountering new developmental issues that come with getting older.

Conventional wisdom says that SMA doesn’t impact a person’s cognitive abilities. But it’s important to recognize that kids under the age of 2 learn by exploring their environment: By grabbing, touching, moving and tasting. Motor development issues can make that harder for babies with SMA.

“Families, along with their neurologist, have to be proactive,” Dr. Bonner urges. “They need to brainstorm together the things they can do to support baby’s cognitive development. Physical, occupational and speech therapy should also be engaged in that conversation.”

Assess safety concerns

We all know that how you position a newborn baby is important. It stays important in babies and toddlers with low muscle tone (hypotonia). Dr. Bonner says being crunched up in a seated position could make it hard for them to breathe.

“I would avoid using bouncer seats and swings,” she emphasizes. “I would also be much more intense about safe sleep. So, not using pillows and blankets, for example.”

Your kid’s physical and occupational therapists will make sure you know how to properly position your baby so they can breathe easily.

Take infectious disease prevention seriously

Even small illnesses can be a big deal if your child has SMA because their pulmonary muscles are weaker. That’s why Dr. Bonner urges you to protect them against infectious diseases. That means:

• Being up to date on vaccinations
• Limiting their (and your) exposure to other people in their earliest months
• Practicing good hand hygiene
• Adopting immune system-boosting behaviors
• Going to the doctor at the first sign of illness

Your little one can’t wear a mask until they’re at least 2. But you and the rest of your family might want to consider it when you’re out and about during respiratory season. After all, you can’t keep them safe without keeping yourself safe.

So, what happens when your kid is sick? The safety net unfurls.

“It’s our job to have a plan for respiratory support should the need arise,” Dr. Bonner says. “I like to make sure that the pulmonary team knows my patients ahead of time. That way, if your kid gets an illness that hits them really hard, you’re not working with people who are brand new to their care team.”

Utilize government resources

One of the first places Dr. Bonner sends SMA caregivers is their local board of developmental disabilities. Depending on where in the world you live, these government agencies may be structured differently, go by different names or offer different services. But they’re good starting points to discuss big-picture concerns like:

• Financial support. Learn about the process of applying for home modification grants, establishing a special needs trust (SNT) and more.
• Healthcare issues. Depending on where you live, paying for SMA treatment can be complicated. In the U.S., your local board of developmental disabilities can help you find out if your child needs supplemental health insurance coverage and if they’re eligible for Medicaid benefits or supplemental security income (SSI).
• Educational interventions. SMA usually doesn’t directly impact a child’s cognitive functioning. But it will impact how they learn. Your local board of developmental disabilities can ensure your child gets the assessments, accommodations and support they need to reach their academic potential.
• Legal protections. From naming a guardian to writing a will, everything’s a bit more complicated when your baby has a disability. Your local board of developmental disabilities can recommend attorneys with the knowledge and insight to ensure your child’s future is protected.

Even if you don’t need help in any of these areas now, building your child’s relationship with local government agencies early can be extremely helpful.

“There tend to be more resources available for pediatric chronic illness care than there are for adults,” Dr. Bonner shares. Being connected to the institutions providing that care as an infant — and knowing how to navigate through the bureaucracy — may make it easier for your kid to access similar services as an adult.

Join the right online support groups

Caring for a young child with a disability can feel incredibly lonely. It’s important — both for your mental health and your kiddo’s — that you reach out to other people in similar circumstances. Support groups offer empathy and understanding. They’re also filled with people who have valuable SMA caregiving advice to share!

Depending on where you live, you might not have access to an in-person SMA support group. That’s where social media comes in. Dr. Bonner recommends joining online support groups that have been endorsed by major medical institutions or the following nonprofit organizations:

• Cure SMA
• The Muscular Dystrophy Association

“I prefer those support groups because we know there’s some degree of medical moderation, but they’re not driven exclusively by doctors,” she notes. “These groups are driven by families and the diverse set of providers that form an SMA care team.”

If you want to cast a wide net, think beyond SMA. There are lots of wonderful advocacy, research and support groups out there dedicated to (1) neuromuscular disorders, (2) rare and orphan diseases and (3) caregivers. You may even be able to find local chapters and in-person support group meetings.

Final thoughts

Children under 2 can be all-consuming. Add in the pressures of SMA management, and it’s easy to lose sight of everything that isn’t your little one. That tunnel vision can take a toll on your family dynamic, your relationships and your health.

That’s why Dr. Bonner emphasizes the importance of self-care routines.

There are many ways to make yourself a priority in your daily life. Getting respite care for your little one so you can enjoy date night is self-care. So is getting your annual physical, keeping up with your friends and carving out time for your hobbies.

Investing in yourself this way is anything but selfish.

“Protecting your mental health is hugely important when you’re navigating life with a chronically ill child,” she continues. “SMA caregiving is a marathon, not a sprint. You need to be in a good place mentally in order to be a steady presence for your child as they grow up.”

Taking care of a baby or toddler with SMA can be a high-wire act. And it’s natural to worry you’ll fall on the job. But you need to trust the people holding your safety net.

“Yes, there’s a ton of things to be thinking about at all times. But your provider team and the rest of your support network is there to make sure you’re not missing anything,” Dr. Bonner reassures. “We’ll ensure everyone’s on track, addressing condition management issues as they arise and setting your child up for success.”

Raising a child with SMA is a big responsibility. But you won’t shoulder that responsibility alone.