Living with Acute bilirubin encephalopathy
A brain condition in newborns caused by too much bilirubin building up, leading to sleepiness, poor feeding, and other signs.
Understanding Acute bilirubin encephalopathy
It results from severe newborn jaundice (a high level of bilirubin in the blood). Symptoms usually start within the first three to five days of life. Other features can include fever, pauses in breathing (apnea), seizures, and coma.
Signs & symptoms
Symptoms vary from baby to baby. GARD lists these among the most common:
- Trouble feeding
- Seizures
- Stiff muscles (hypertonia)
- Cerebral palsy
- Hearing loss (sensorineural hearing impairment)
- Long-lasting yellowing of the skin in a newborn
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 brain and nervous 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
- Brain and nervous system specialists (neurologists); 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
GARD says changes in genes (also called variants) cause this condition. The summary describes it as coming from severe newborn jaundice, with bilirubin building up in the brain.
Also known as: abe; acute kernicterus; acute kernicterus of newborn
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 Acute bilirubin encephalopathy.
Explore research for Acute bilirubin encephalopathy
Explore actively recruiting Acute bilirubin encephalopathy studies with HealthSpark.
Find actively recruiting studies for Acute bilirubin encephalopathy 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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