Spinal Muscular Atrophy Program
About us
Our Spinal Muscular Atrophy Program at Children’s Hospital Boston is devoted to providing comprehensive care for children with spinal muscular atrophy (SMA). The program brings together specialists from a variety of fields including:
- Neurology
- Orthopedics
- Physical Therapy
- Respiratory/Pulmonary
- Nutrition
- Gastroenterology
- Anesthesia
- Surgery (non-orthopedic)
- Social Work
A dedicated SMA clinic
Our core team of physicians, specialists and therapists sees patients together once a month. When you come for an appointment during this clinic, your child will be seen by three teams of specialists:
1) Neurology, Orthopedics and Physical Therapy
2) Nutrition
3) Respiratory/Pulmonary care
The clinic allows you to meet with all of your child’s SMA-related providers during a single visit. It also gives us the opportunity to evaluate your child’s health as a whole, and to talk with your family so that we can make the best decisions moving forward as a united front.
Our SMA clinic time also gives you a chance to meet other families affected by SMA, if you wish, and to learn about research opportunities.
Specialists who are sensitive to the needs of children with SMA
We have a network of specialists who are experienced in caring for children with SMA. For example, a child with SMA who needs anesthesia for a surgical procedure can have complications because of weakness in his or her respiratory muscles. Because of this, we work with several Children’s Hospital anesthesiologists who understand SMA and have expertise of how to safely provide anesthesia for our patients. See the Meet our team tab for a list of the specialists we collaborate with.
For families whose children are facing an especially difficult prognosis, we put them in touch with the Pediatric Advanced Care Team at Children’s. This group can provide comfort for you and your child and support as you make choices about treatment.
Our diagnostic services
We use a number of different tests to help us accurately diagnose your child and evaluate his or her condition. Our program takes advantage of several superb clinical and laboratory resources at Children’s:
Electromyography (EMG) and nerve conduction velocity (NCV) studies are performed to record the activity of muscles and motor nerves. Children’s has its own EMG laboratory, which is staffed by the neurologists in our program.
Genetic testingis done right here in the Children’s Genetics Diagnostic Laboratory.
Our SMA Program at Children’s is supported by the Spinal Muscular Atrophy Foundation.
