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Living with Neonatal diabetes mellitus

A form of diabetes that starts in the first months of life, with high blood sugar and poor weight gain.

Understanding Neonatal diabetes mellitus

Neonatal diabetes mellitus is a form of diabetes that appears in a child within the first months of life.

It shows up as high blood sugar (hyperglycemia) and poor weight gain. In some cases, children become dehydrated or have ketoacidosis, a buildup of acids in the blood, which may be severe and cause coma.

Signs & symptoms

GARD doesn't list a symptom list, but the summary describes these features:

  • High blood sugar (hyperglycemia)
  • Poor weight gain (failure to thrive)
  • Dehydration in some babies
  • Ketoacidosis in some babies

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

    Specialists who may be involved include genetic specialists and hormone specialists.

  3. Ask which tests can help

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

Care & treatment

Care team
Genetic specialists (geneticists); Hormone specialists (endocrinologists)
Expert care
Ask about multidisciplinary care centers for rare conditions
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 rare disease patient organizations for support
  • 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
Is genetic testing available to find the cause?
How will we manage my baby's blood sugar?
Which specialists should be on my child's care team?

Quick facts

Symptoms usually startNewborn and as an Infant
InheritanceAutosomal Dominant, Autosomal Recessive

GARD says changes in genes cause this condition. It can be inherited in an autosomal dominant or an autosomal recessive pattern.

GeneticEndocrine

Also known as: congenital diabetes mellitus; diabetes mellitus syndrome in newborn infant; ndm

Patient organizations

Rare-disease groups that can help

Source: NIH GARD · Neonatal diabetes mellitusGARD ID 18682 · 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 Neonatal diabetes mellitus.

Explore the Neonatal diabetes mellitus blog

Explore research for Neonatal diabetes mellitus

Explore actively recruiting Neonatal diabetes mellitus studies with HealthSpark.

HealthSpark

Find actively recruiting studies for Neonatal diabetes mellitus 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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