Raising a child with a physical disability can be challenging. Spinal muscular atrophy (SMA) can affect all aspects of day-to-day life. Your child will not only have a harder time getting around, but also is at risk of complications. Staying informed about the condition is important to give your child what they need to live a fulfilling and healthy life.
Learning about your child’s SMA type
To understand how SMA will affect your child’s life, you first need to learn about their particular type. Three main types of SMA develop during childhood. In general, the earlier symptoms develop, the more severe their condition will be.
Type 1 (Werdnig-Hoffman disease)
Type 1 SMA is usually diagnosed within the first six months of life. It has a poor prognosis. Most children with type 1 SMA will live only a few years due to complications with breathing.
Type 2 (intermediate SMA)
Type 2 SMA is usually diagnosed between the ages of 7 and 18 months. Children with type 2 SMA won’t be able to stand on their own and will have weakness in the muscles of their arms and legs. They may also have weakened breathing muscles.
Type 3 (Kugelberg-Welander disease)
Type 3 SMA is usually diagnosed by age 3 but can sometimes come later in life. Type 3 SMA is less severe than types 1 and 2. Your child may have trouble standing up, balancing, using the stairs, or running. They may also lose the ability to walk later in life.
Although rare, there are many other forms of SMA. One such form is spinal muscular atrophy with respiratory distress (SMARD). Diagnosed in infants, SMARD can lead to severe breathing problems.
People with SMA might not be able to walk or stand on their own, or they might lose their ability to do so later on in life.
Children with type 2 SMA will have to use a wheelchair to get around. Children with type 3 SMA may be able to walk well into adulthood.
There are many devices to help young children with muscle weakness stand and get around, such as powered or manual wheelchairs and braces. Some families even design custom wheelchairs for their child.
Two complications to be aware of are issues with breathing and spinal curvature.
For people with SMA, weakened respiratory muscles make it challenging for oxygen to make its way in and out of their lungs. A child with SMA is also at higher risk of developing severe respiratory infections.
Respiratory muscle weakness is generally the cause of death in children with type 1 and 2 SMA.
Your child may need to be monitored for respiratory distress. In that instance, a tool called a pulse oximeter can measure the level of oxygen saturation in the blood.
People with less severe forms of SMA can benefit from breathing support. Noninvasive ventilation (NIV), which delivers room air to the lungs through a mouthpiece or mask, may be needed.
Scoliosis sometimes develops in people with SMA because the muscles supporting their spine are often weak.
Scoliosis is uncomfortable and can have a significant impact on mobility. It’s treated based on the severity of the spinal curve, and the likelihood of the condition improving or worsening over time. Because they are still growing, young children might only require a brace. Adults with scoliosis might need medication for pain or surgery.
Children with SMA have normal intellectual and emotional development. Some even have above-average intelligence. Encourage your child to take part in as many age-appropriate activities as possible.
A classroom is a place where your child can excel, but they still might need help with managing their load. They will likely need special help for writing, painting, and using a computer or phone.
The pressure to fit in can be challenging when you have a physical disability. Counseling and therapy can play a huge role in helping your child feel more at ease in social settings.
Exercise and sports
Having a physical disability doesn’t mean your child can’t take part in sports and other activities. In fact, your doctor will likely encourage your child to engage in physical activity.
Exercise is important for general health and can enhance the quality of life.
Children with type 3 SMA can do the most physical activities, but they may tire. Thanks to strides in wheelchair technology, children with SMA can enjoy wheelchair-adapted sports, such as soccer or tennis. A rather popular activity for children with types 2 and 3 SMA is swimming in a warm pool.
Occupational and physical therapy
On a visit with an occupational therapist, your child will learn exercises to help them carry out daily activities, such as getting dressed.
During physical therapy, your child may learn various breathing practices to help strengthen their respiratory muscles, in addition to more conventional movement exercises.
For children with type 1 SMA, proper nutrition is critical. SMA can affect the muscles used for sucking, chewing, and swallowing. Your child can easily become malnourished and may need to be fed through a gastrostomy tube. Speak with a nutritionist to learn more about your child’s dietary needs.
Obesity is a concern for children with high-functioning forms of SMA, as they are less active. There is little evidence to suggest that any particular diet is useful. Other than eating well and avoiding unnecessary calories, a special diet isn’t necessary for people with these forms of SMA.
The life expectancy in childhood-onset SMA varies. Most children with type 1 SMA will only live a few years. Children with milder types of SMA can survive long into adulthood and live healthy, fulfilling lives.
The bottom line
No two people with SMA are exactly alike. Knowing what to expect can be difficult.
Your child will need some degree of help with day-to-day tasks and will likely require physical therapy. You should be proactive in managing complications and providing your child with the support they need.
It’s important to stay as informed as possible and to work alongside a medical care team.
Keep in mind that you aren’t alone. Plenty of resources are available online, including information on support groups and services.