Living with Bilirubin encephalopathy
A rare brain condition that can happen when a newborn's untreated jaundice lets bilirubin build up and harm the brain.
Understanding Bilirubin encephalopathy
Mild jaundice is common in newborns. In some babies, bilirubin gets too high and can harm certain parts of the brain. Babies may have breathing problems, muscle spasms, or low muscle tone. Later, there may be movement delays, seizures, hearing loss, intellectual disability, and speech problems. Together these are called bilirubin-induced neurologic dysfunction (BIND).
Signs & symptoms
Symptoms vary from person to person. GARD describes these as possible signs:
- Breathing problems in newborns
- Muscle spasms or low muscle tone
- Delays in movement
- Seizures
- Hearing loss
- Speech problems and intellectual disability
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 g6pd Deficiency Foundation
- 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
Bilirubin, a yellow substance in the blood, builds up to harmful levels. Risk is higher in babies born early or with feeding problems, bruising, a sibling who had jaundice, or a mother with blood type O or Rh-negative blood.
Also known as: hyperbilirubinemic encephalopathy; kernicterus; kernicterus of newborn; nuclear jaundice
Patient organizations
- g6pd Deficiency FoundationBilirubin encephalopathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Bilirubin encephalopathy.
Explore research for Bilirubin encephalopathy
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- Recruiting studies from ClinicalTrials.gov
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- 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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