Living with Diabetic embryopathy
A rare condition in which an infant has birth differences or newborn complications linked to diabetes in the mother.
Understanding Diabetic embryopathy
Features can affect the heart, nervous system, spine, lungs, and other parts of the body. GARD lists onset during pregnancy and in the newborn period.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Heart and blood vessel differences
- Differences in the nervous system
- Small head size (microcephaly)
- Differences in the lower spine (sacrum)
- Differences in lung arteries
- Differences in the neck
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include ear, nose, and throat specialists, genetic specialists, heart and blood vessel specialists and hormone specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Children's Cardiomyopathy Foundation and World Craniofacial Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Ear, nose, and throat specialists (otolaryngologists); Genetic specialists (geneticists); Heart and blood vessel specialists (cardiologists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: Children's Cardiomyopathy Foundation, World Craniofacial Foundation
- 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 Children's Cardiomyopathy Foundation 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
Quick facts
It is linked to diabetes in the mother during pregnancy. GARD also lists changes in genes as a cause.
Patient organizations
- Children's Cardiomyopathy FoundationCardiomyopathy · United States
- World Craniofacial FoundationCraniofacial anomalies · United States
- Children's Craniofacial AssociationCraniofacial anomalies · United States
- FACES: The National Craniofacial AssociationCraniofacial anomalies · United States
- myFaceCraniofacial anomalies · United States
You are more than your diagnosis
Perspectives from people navigating life with Diabetic embryopathy.
Explore research for Diabetic embryopathy
Explore actively recruiting Diabetic embryopathy studies with HealthSpark.
Find actively recruiting studies for Diabetic embryopathy 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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