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Living with Spinal muscular atrophy type 0

A spinal muscular atrophy that shows before birth, with less movement in the womb, weak muscles and weak breathing muscles.

Understanding Spinal muscular atrophy type 0

Spinal muscular atrophy type 0 is a childhood spinal muscular atrophy that is evident before birth.

Babies move less in the womb. They are born with joint deformities, extremely weak muscle tone and very weak muscles for breathing.

Signs & symptoms

GARD doesn't list a separate symptom list for this condition. Based on its summary, features include:

  • Less movement in the womb
  • Joint deformities
  • Extremely weak muscle tone
  • Very weak breathing muscles

Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.

Diagnosis

  1. Talk with your doctor

    Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.

  2. See a specialist

    Your doctor may refer you to a specialist who knows rare conditions.

  3. Ask which tests can help

    Your care team will decide which exams and tests can confirm the diagnosis.

  4. Connect with expert centers

    Muscular Dystrophy Association may keep lists of experts for this condition.

Care & treatment

Care team
A doctor familiar with rare conditions, plus specialists as needed
Expert care
Expert lists: Muscular Dystrophy Association
Treatment
GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
Research
Clinical trials and observational studies may be options. See the research section below.

General information, not medical advice. Your care team makes the decisions.

Everyday life

Living with a rare condition is easier with support.

  • Connect with Cure SMA and other patient organizations
  • Keep notes on symptoms, changes and questions for appointments
  • Ask about patient registries that help research
  • Look into financial aid and travel resources for care visits
Bring these questions to your next doctor visit
Can genetic testing confirm the diagnosis?
What breathing support is available?
Which specialists should be on our care team?

Quick facts

GARD doesn't describe a cause for this condition yet.

Patient organizations

Source: NIH GARD · Spinal muscular atrophy type 0GARD ID 26588 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

You are more than your diagnosis

Perspectives from people navigating life with Spinal muscular atrophy type 0.

Explore the Spinal muscular atrophy type 0 blog

Explore research for Spinal muscular atrophy type 0

Explore actively recruiting Spinal muscular atrophy type 0 studies with HealthSpark.

HealthSpark

Find actively recruiting studies for Spinal muscular atrophy type 0 with HealthSpark. Share your city to explore research near you.

  • Recruiting studies from ClinicalTrials.gov
  • Share your city to look for research near you
  • Eligibility is confirmed by the study team

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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.

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