One page summary: Kernicterus and untreated newborn jaundice

In two sentences

Kernicterus is permanent brain damage caused by bilirubin that rose too high and stayed there. It affects movement, hearing and eye control. ¹

Almost all newborns get some jaundice. It becomes dangerous only when the level goes far above the treatment threshold for that baby's age in hours. This is one of the few serious outcomes on this site with a clear, published, hour-by-hour prevention standard. ¹

The numbers, with their sources

• How common jaundice is. Most newborns develop some jaundice in the first days of life, and in the great majority it is harmless and resolves ¹
• How risk is judged. By the total serum bilirubin level plotted against the baby's exact age in hours, adjusted for gestational age and risk factors, not by how yellow the baby looks ¹
• The first treatment. Phototherapy, which is blue light that changes bilirubin into a form the body can remove ¹
• The emergency treatment. Exchange transfusion, in which the baby's blood is removed in small amounts and replaced, used when the level crosses the exchange threshold ¹
• Which part of the brain. Bilirubin damages the basal ganglia and the hearing pathways, which is why kernicterus produces a movement disorder together with hearing loss ²
• The follow-up rule. Guidance sets out when a newborn discharged from hospital must be seen again for a bilirubin check, based on age at discharge and the level at that time ¹

What to do this week

1. Request every bilirubin value with the exact time and the baby's age in hours. This is the single most important record.
2. Request the discharge summary and the discharge instructions, including what follow-up was arranged and when.
3. Ask what the treatment threshold was for your baby at each measured time.
4. Ask when phototherapy started and stopped, and whether exchange transfusion was considered.
5. Arrange a full audiology assessment, including testing for auditory neuropathy.
6. Ask for a brain MRI if it has not been done.
7. Refer to early intervention today.

Questions to take with you

Take these with you. Write the answers down in the moment, because you will not remember them later.

For the neonatologist or pediatrician

• What were all the bilirubin values, and at what hour of age was each drawn?
• What was the phototherapy threshold and the exchange threshold at each of those times?
• When did phototherapy start, and at what intensity?
• Was exchange transfusion considered, and what was the decision?
• What was the discharge follow-up plan, and was it kept?

For the audiologist

• Is there auditory neuropathy, as opposed to ordinary hearing loss?
• What technology fits this pattern of hearing loss?
• How does this change the communication plan?

For the neurologist

• What did the MRI show in the globus pallidus?
• What movement pattern do you expect, and how will we manage it?
• What is the plan for communication?

You can also build a printable list with the question generator.

Where to read more

The full page on this condition covers how it happens, causes split into what happens even with perfect care and what is associated with gaps in care, signs by age, diagnosis, treatment, outlook, daily life and lifetime cost.

Read the full page on Kernicterus and untreated newborn jaundice

Related pages are listed at the bottom of it, including the events that can lead to this condition and the guides that cover therapy, school and money.