Living with Neonatal hemochromatosis
A condition in which too much iron builds up in a baby's organs before birth, causing liver damage.
Understanding Neonatal hemochromatosis
Iron buildup in organs can cause organ damage. It tends to progress quickly, with liver damage apparent at birth or in the first days of life. Babies may be born early or grow slowly in the womb. Symptoms may include low blood sugar, blood clotting problems, yellow skin and eyes (jaundice), and swelling (edema).
Signs & symptoms
GARD lists these among the most common:
- Prolonged yellowing of the skin (jaundice)
- Liver scarring present at birth
- Low blood sugar
- Blood clotting problems
- Swelling (edema)
- Small lower jaw (micrognathia)
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 digestive system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Digestive system specialists (gastroenterologists); Genetic specialists (geneticists)
- 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
Quick facts
The exact cause is unknown. It is thought that a pregnant woman's immune system may recognize cells of the baby's liver as foreign. If a woman had a baby with neonatal hemochromatosis, each future child has an 80% chance to have the disease as well.
Also known as: alloimmune hepatitis, congenital; idiopathic neonatal hemochromatosis; neonatal hepatitis
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Neonatal hemochromatosis.
Explore research for Neonatal hemochromatosis
Explore actively recruiting Neonatal hemochromatosis studies with HealthSpark.
Find actively recruiting studies for Neonatal hemochromatosis 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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