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There are many ways you can help children and their families get the care they need.
At Boston Children's, we know how difficult a diagnosis of SMA can be, both for your child and for your whole family. That's why our providers are focused on family-centered care: from your first visit, you'll work with a team of professionals who are committed to supporting all of your family's physical and psychosocial needs. We'll work with you to create a care plan that is best for you and your child.
What is the treatment for spinal muscular atrophy?
The aim of treatment is to prevent respiratory problems, maintain function and strength, and provide adequate nutritional care to your child. Medication is currently not a form of SMA treatment. Current treatment may involve a breathing machine in severe cases, usually for type I. Breathing machines may also be necessary for type II and III depending on the severity of the disease. A pulmonologist and respiratory therapist experienced with SMA will guide you in using the different machines your child may need. Additionally, physical therapy and braces may help to maintain muscle strength and function. However, specific treatment varies based on your child's age, overall health, medical history, extent of the condition, type of SMA and your goals for your child.
It takes a multidisciplinary approach to address the effects that SMA can have on a person's respiratory system, gastrointestinal system, weight and bone structure. Our Spinal Muscular Atrophy Program brings together specialists from a variety of fields including:
At Boston Children's Hospital, we believe it is important to preserve the highest quality of life as possible. The Neurology Department at Boston Children's Hospital offers an SMA Clinic once a month. The clinic allows you to meet with all of your child's SMA-related providers during a single visit. We provide our SMA patients with the most comprehensive team of doctors and specialists. By coordinating all SMA related care, we have the opportunity to evaluate our patients' health as a whole and make the best decisions moving forward as a united front. In addition, the clinic will provide families the chance to meet others living with SMA and to learn about our many research opportunities available. We hope that families will take this time to network and establish supportive relationships with other families, utilize our many specialists who will be on hand at the clinic, and investigate the important SMA research we conduct.
Coping & support
It might be helpful to remember that while SMA can feel isolating, many children and their families have faced similar challenging conditions. You are not alone. There's a lot of support available here at Boston Children's Hospital for you and your family, and here are some of the ways we can help. Our team in the Spinal Muscular Atrophy Program at Boston Children's Hospital will talk with you about your child's condition, discuss any questions you have and try to help you find the support you need. Our list of resources may also be helpful to you.
Visit our For Patients and Families page for all you need to know about:
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”