Children with spinal muscular atrophy (SMA) need care from specialists in several medical fields. A dedicated care team is necessary to maximize your child’s quality of life.
A good care team will help your child avoid complications and meet their daily needs. A great care team will also guide their transition into adulthood.
Specialists on a child’s SMA care team will likely include:
- genetic counselors
- neuromuscular specialists
- physical therapists
- occupational therapists
SMA can affect your entire family. A care team should also include social workers and community liaisons. These specialists can help connect everyone to supportive resources within your community.
A nurse practitioner will help coordinate your child’s care. They become the “go-to” person in all aspects of support for your child, as well as your family.
A neuromuscular physician will often be the first specialist to meet with you and your child. To reach a diagnosis, they will perform a neurological exam and nerve conduction studies. They will also devise a treatment program specifically for your child and make referrals when appropriate.
Your child will meet with a physical therapist regularly throughout their life. A physical therapist will aid with:
- range of motion exercises
- fitting orthotics and braces
- weight-bearing exercises
- aquatic (pool) therapy
- breathing exercises to strengthen the respiratory muscles
- making recommendations for other equipment such as special seats, strollers, and wheelchairs
- suggesting and teaching you activities that can be done with your child at home
An occupational therapist focuses on day-to-day activities, such as eating, dressing, and grooming. They may recommend equipment to help your child build their skills for these activities.
A common complication for children with SMA is scoliosis (spinal curvature). An orthopedic specialist will assess spinal curvature and provide treatment. Treatment can range from wearing a back brace to surgery.
Muscle weakness can also cause an abnormal shortening of muscle tissue (contractures), bone fractures, and hip dislocation.
An orthopedic surgeon will determine if your child is at risk of such complications. They will teach you preventative measures and recommend the best course of treatment if complications do happen.
All children with SMA will need help with breathing at some point. Children with more severe forms of SMA will likely need help every day. Those with less severe forms may need help breathing when they have a cold or respiratory infection.
Pediatric pulmonologists will assess your child’s respiratory muscle strength and pulmonary function. They will disclose whether your child needs the help of a machine for breathing or coughing.
A respiratory care specialist helps with meeting your child’s respiratory needs. They will teach you how to manage your child’s respiratory routine at home and provide the equipment to do so.
A dietician will watch your child’s growth and make sure they are getting proper nourishment. Children with type 1 SMA may have trouble sucking and swallowing. They will need extra nutritional support, like a feeding tube.
Due to lack of mobility, children with higher functioning forms of SMA are at a greater risk of being overweight or obese. A dietician will make sure your child is eating well and maintaining a healthy body weight.
Social workers can help with the emotional and social impact of having a child with special needs. This can include:
- helping families adjust to new diagnoses
- locating financial resources to help with medical bills
- advocating for your child with insurance companies
- providing information on government services
- working with a nurse to coordinate care
- assessing your child’s psychological needs
- working with your child’s school to ensure they are aware of how to handle your child’s needs
- assisting with travel to and from care centers or hospitals
- addressing issues related to guardianship of your child
A community liaison can put you in touch with support groups. They can also introduce you to other families that have a child with SMA. As well, community liaisons may plan events to raise awareness of SMA or money for research.
A genetic counselor will work with you and your family to explain the genetic basis of SMA. This is important if you or other family members are thinking of having more children.
There’s not a one-size-fits-all approach to treating SMA. The symptoms, needs, and severity of the condition can vary from person to person.
A dedicated care team can make it easier to tailor a treatment approach to your child’s needs.