What is kernicterus?

Kernicterus is a rare but dangerous complication of jaundice in which the newborn baby’s brain is damaged from excessive levels of bilirubin.

Bilirubin is a yellow pigment that everybody has in their blood. It is released into the bloodstream during the body’s normal process of breaking down old red blood cells.  It is processed in the liver and stored in the bile duct and gallbladder. Bilirubin helps the body digest fats in the small intestine, where it is known as bile. It is then passed out of the body along with the rest of the body’s waste. 

Kernicterus is a ‘never event’

Kernicterus is a ‘never event’. No baby should be allowed to develop this dangerous condition because it is preventable with correct neonatal care. Kernicterus is caused by negligent or delayed treatment of the more common condition called jaundice. Where a baby has suffered kernicterus brain damage as a result of negligent midwifery or neonatal care they may have a claim for compensation.

What is the difference between kernicterus and jaundice?

When there is too much bilirubin in the blood for the liver to process, the first signs that the baby has excess bilirubin may include:

• yellow discolouration of the baby’s skin
• yellow discolouration of the whites of their eyes
• dark staining of the urine (visible on their nappy)
• pale chalky stools

This condition is known as jaundice.

Neonatal jaundice affects 60% of full term (born at 37+ weeks)  babies and 80% of premature babies during the first few days of life. Breastfed babies are at greater risk of neonatal jaundice and may suffer the effects of the condition for as long as a month.

Neonatal jaundice can last up to two weeks and is usually harmless, but it must be diagnosed, monitored and treated if it doesn’t resolve early, to avoid the development of more serious conditions. Untreated jaundice can lead to bilirubin brain damage which is known as kernicterus.

In addition to its own risks, jaundice can be a sign of other conditions which may need treatment, such as:

• Infection
• Sepsis
• Liver disease
• Incompatibility between the mother’s and the baby’s blood groups
• Bruising and metabolic disorders
• Sickle cell anaemia
• Enzyme deficiencies

How does untreated jaundice develop into kernicterus?

When the liver is unable to process the excess bilirubin in the blood, the baby will have hyperbilirubinaemia. (too much bilirubin in the blood). Hyperbilirubinaemia causes the yellow discolouration of the skin, eyes and urine which we call jaundice.

Where a baby has jaundice or hyperbilirubinaemia, their bilirubin levels must be monitored. If their bilirubin is rising rapidly or exceeding safe bilirubin levels, the baby must be treated in hospital with a special light treatment called phototherapy. They will sometimes also need an exchange blood transfusion.

If left untreated, the toxic, unconjugated (not metabolised by the liver) bilirubin can penetrate the blood-brain barrier where it damages the brain and spinal cord, causing neurological dysfunction. The brain damage that this causes is known as bilirubin encephalopathy.  The pattern of bilirubin damage to the brain and its yellow colour is often called kernicterus.

The baby may show the initial signs of kernicterus brain damage by:

• Poor feeding
• Failing to respond to stimulus, such as clapping hands in front of them
• Decreased muscle tone (floppiness)
• Seizures or fits
• Arching of the spine

Long term disabling effects of kernicterus brain damage can vary in severity but include:

• Cerebral palsy
• Hearing loss
• Learning disability
• Impaired eye movements

RCM guidance for virtual consultations warns ‘screen effect’ makes it harder to detect neonatal jaundice

As more midwife consultations now take place virtually, the Royal College of Midwives (RCM) have released guidance for midwives to ensure that all care is safe and of high quality.

RCM stress the importance of in-person appointments where they are needed to provide safer care. In particular, RCM warned that poor lighting and ‘screen effect’ can make it harder for midwives to recognise signs of neonatal jaundice using video technology.

RCM recommends that post-natal midwives have a low threshold (move quickly) to urgent in-person consultation if there are any concerns or anything is unclear about the baby’s condition.

My baby has kernicterus brain damage – how can I make a claim?

At Boyes Turner we are experts in helping children affected by severe brain damage in the birth and neonatal period. Our experienced kernicterus compensation lawyers recognise negligent jaundice treatment, whether that takes place in hospital after birth,  or from community midwives after the baby was discharged home. We understand the disability caused by kernicterus and are skilled in recovering maximum compensation.

Legal Aid may be available for kernicterus compensation claims if the child suffered severe neurological injury caused by negligence during the first eight weeks of life.

If you are caring for a child with severe neurological disability which was caused by negligent medical care of jaundice, contact the team by email at mednegclaims@boyesturner.com.