Jaundice is a common condition caused by a build-up of a yellow pigment called bilirubin in a newborn baby’s blood. Bilirubin is produced naturally when red blood cells break down, but a newborn baby’s liver may not yet process it quickly enough. This can cause the baby’s skin and the whites of their eyes to appear yellow. Kernicterus is a rare but serious form of permanent brain damage that can develop when severe jaundice is not recognised and treated quickly enough.

Most babies who develop jaundice do not go on to develop kernicterus. With appropriate checks, monitoring and treatment, hospital care staff can usually prevent bilirubin levels from becoming dangerous. However, if warning signs are missed or treatment is delayed, excess bilirubin can enter the baby’s brain and cause lasting harm.

For families, the difference between jaundice and kernicterus may only become clear when their child develops. The signs and symptoms may present as movement difficulties, hearing loss, feeding problems or developmental delays. This leads to difficult questions about whether earlier checks or treatment could have prevented the injury.

In this guide we explain the difference between jaundice and kernicterus, and what clinicians and hospital staff should do when a baby’s bilirubin levels are raised to prevent this from occurring. We also explain when failures in care may amount to negligent medical treatment and how JMW helps families investigate what happened and make kernicterus claims to obtain compensation to help their child’s current and future needs.

What Is Newborn Jaundice?

Newborn jaundice happens when bilirubin builds up in a baby’s blood. Bilirubin is a yellow pigment produced when red blood cells break down.

An older child’s or adult’s liver usually processes bilirubin and helps remove it from the body. A newborn baby’s liver is still developing, so it may not process bilirubin as efficiently during the first few days after birth. This can cause bilirubin to circulate in the baby’s blood and make their skin, eyes or gums look yellow.

The NHS guide to newborn jaundice explains that jaundice is common in newborn babies and usually appears around two days after birth. In many cases, it improves without causing harm, as the baby’s liver matures and feeding becomes established. Some breastfed newborns may also experience breast milk jaundice, which can last longer, but does not usually cause serious problems. Mothers can still breastfeed their baby, but in certain circumstances may need to pause under a doctor’s guidance.

Doctors and midwives should not assume that all jaundice is harmless, and may decide a baby needs closer monitoring or a blood test if:

• Jaundice appears within the first 24 hours after birth
• The yellow colouring becomes stronger or spreads
• The baby was born prematurely
• The baby is feeding poorly or has fewer wet nappies
• The baby is unusually sleepy or difficult to wake
• The baby has significant bruising following the birth
• There is a known blood group incompatibility or haemolytic disease
• The baby appears unwell

These “red flag” signs can indicate that bilirubin levels are rising quickly or that there is an underlying cause that needs treatment. Early detection allows doctors and midwives to check how much bilirubin is in the baby’s blood and act before it reaches a dangerous level.

What Is Kernicterus?

Kernicterus is a rare form of permanent brain damage caused by very high bilirubin levels. When too much of a certain kind of bilirubin builds up in a baby’s blood, it can cross the blood brain barrier and damage the delicate brain tissue.

The first stage of this injury is known as acute bilirubin encephalopathy. At this point, bilirubin has started to affect the baby’s brain and central nervous system. Urgent treatment may still prevent the damage from becoming permanent.

If bilirubin remains at a dangerous level and brain damage becomes permanent, the condition is known as kernicterus.

Kernicterus affects parts of the brain involved in movement, posture, hearing and coordination. A child with kernicterus may experience:

• Cerebral palsy
• Hearing loss or difficulty processing sound
• Problems with balance and coordination
• Feeding and swallowing difficulties
• Speech and communication delays
• Unusual eye movements or vision problems
• Developmental delays
• A need for long-term care, therapy, equipment and educational support

Some signs may be visible soon after the neonatal period. Others may become clearer as the child grows and is expected to reach milestones such as sitting, walking, speaking or feeding independently.

Parents may first notice that their toddler is late to walk, does not respond consistently to sound, struggles to control their movements or needs more help with feeding. Our guide to the key symptoms of kernicterus explains the signs families may notice as their child develops. You can also read our guide on the long-term effects of kernicterus.

When these effects occur, they impact every part of a child and their family's life. Parents should seek urgent medical advice if their baby is jaundiced and is difficult to wake, refusing feeds, becoming floppy or stiff, or showing unusual movements.

For a closer look at the warning signs, read our guide to the key symptoms of kernicterus every parent should know.

Which Babies Have a Higher Risk of Severe Jaundice?

Any newborn baby can develop jaundice, but some babies have known risk factors that make the condition more likely.

These include:

• Premature birth
• Jaundice appearing within the first 24 hours
• A previous sibling who needed treatment for newborn jaundice
• Poor feeding or dehydration
• Significant bruising following birth
• Blood group incompatibility between mother and baby
• Haemolytic disease
• G6PD deficiency or another inherited blood condition
• A low birth weight
• An underlying liver or bile duct condition
• Neonatal sepsis or another illness

Jaundice can also be harder to recognise in babies with darker skin. Doctors, midwives and nurses should check the whites of the eyes and gums and should not rely on skin colour alone when deciding whether bilirubin testing is needed.

Having a risk factor does not mean that a baby will develop kernicterus. It means that the baby should be closely monitored and that staff should respond promptly if jaundice develops or worsens. Where this has not happened, and kernicterus has occurred, it is reasonable for a family to ask questions around whether their baby's treatment was negligent.

How Should Doctors and Midwives Assess Jaundice?

Doctors and midwives should assess jaundice carefully and arrange bilirubin testing when needed.

A physical examination will help identify yellowing of the baby’s skin or eyes, but visual checks alone do not show how much bilirubin is in the baby’s blood. Jaundice is also difficult to see in some lighting or on darker skin, so the whites of the eyes should be checked.

Bilirubin levels can be assessed using a device placed against the baby’s skin. This is known as a transcutaneous bilirubin test. In other circumstances, staff should take a blood sample, often from the baby’s heel, to measure total serum bilirubin.

Doctors should then compare the serum bilirubin level against a treatment threshold chart that accounts for factors like:

• The baby’s age in hours
• Whether they were born prematurely
• How quickly bilirubin levels are rising
• Whether known risk factors are present
• any evidence baby appears unwell

The National Institute for Health and Care Excellence guidance on jaundice in newborn babies sets out how healthcare providers should assess and manage neonatal jaundice.

Staff should also listen carefully to parents. Parents may be the first to notice that their baby is becoming more yellow, feeding less, producing fewer wet nappies or becoming difficult to wake. Reassurance should follow an appropriate assessment. Doctors and midwives should not dismiss concerns without carrying out the checks the baby needs.

How Is Severe Jaundice Treated?

The treatment a baby needs will depend on their total serum bilirubin level, gestational age, age in hours and overall condition.

Phototherapy

Phototherapy treatment, also known as light therapy, is the main treatment for severe newborn jaundice.

The baby is placed beneath a special light that changes unconjugated bilirubin into a form that the baby’s body can remove more easily. Doctors and nurses should continue checking serum bilirubin levels during treatment to make sure they are falling.

Phototherapy is usually effective when it starts at the right time. A delay can allow bilirubin levels to continue rising and increase the risk of acute bilirubin encephalopathy.

Exchange transfusion

An exchange transfusion may be needed if bilirubin levels are extremely high, or if the levels aren’t reduced with phototherapy.

During an exchange transfusion, small amounts of the baby’s blood are removed and replaced with donor blood. This rapidly reduces the amount of bilirubin circulating in the baby’s body. The procedure usually takes place in a neonatal intensive care unit.

An exchange transfusion is only used in serious cases, but it can prevent permanent brain damage where phototherapy alone is not reducing bilirubin levels quickly enough.

Feeding support and other care

A baby who is feeding poorly may need support from a midwife, neonatal nurse or feeding specialist. Good feeding helps the baby’s body remove bilirubin through their faeces and urine.

Some babies may need treatment for the underlying cause of their jaundice, such as haemolytic disease or another condition affecting the blood or liver.

Can Early Treatment Prevent Kernicterus?

Kernicterus is usually preventable when jaundice is recognised and treated early.

Early diagnosis gives the baby the best chance of avoiding permanent injury, through close monitoring of bilirubin levels, consideration of phototherapy and if necessary an exchange transfusion.

Once kernicterus has caused permanent brain damage, treatment cannot reverse the injury. However, a child may receive support from paediatricians, physiotherapists, occupational therapists, audiologists, speech and language therapists, dietitians and education specialists.

This is why the early stages of jaundice are so important. A missed opportunity to test or treat a baby can change the course of their life.

When Can Kernicterus Be Linked to Medical Negligence?

Medical negligence can occur when the care from the hospital staff (whether they be a doctor, midwife, nurse, etc) falls below a reasonable standard and this subsequently causes injury.

Not every case of jaundice or kernicterus involves medical negligence. The key questions are whether staff should have recognised the risk, and whether they should have acted sooner in order to avoid a preventable injury.

Examples of failures that may give rise to a medical negligence claim include:

• Failing to recognise visible newborn jaundice
• Not arranging a bilirubin test when jaundice was suspected
• Relying on a visual examination when a blood test was needed
• Failing to consider the baby’s gestational age or known risk factors
• Not measuring total serum bilirubin urgently when jaundice appeared in the first 24 hours
• Failing to monitor rising serum bilirubin levels
• Not acting on an abnormal blood test result
• Delaying phototherapy treatment
• Failing to check whether phototherapy was working
• Delaying referral to a paediatrician or neonatal intensive care unit
• Failing to consider an exchange transfusion
• Discharging a baby without appropriate checks or follow-up
• Failing to provide clear safety-netting advice
• Dismissing parental concerns about poor feeding, sleepiness, yellow skin or unusual behaviour
• Failing to recognise jaundice in a baby with darker skin

In some cases, no single failure causes the injury. Instead, there may have been several missed opportunities.

A medical negligence investigation examines what happened at each stage and whether reasonable care would have led to earlier treatment and crucially avoidance of the injury.  

How Does JMW Investigate a Kernicterus Claim?

We start by listening carefully to what happened and gathering the evidence needed to investigate your child’s care.

This may include:

• Maternity records
• Neonatal records
• Community midwife notes
• Health visitor records
• GP records
• Hospital records
• Bilirubin test results
• Treatment threshold charts
• Phototherapy records
• Discharge notes
• Your own detailed account of the concerns you raised
• Evidence from anyone who attended appointments with you

Our medical negligence team gathers the necessary documents and reviews the sequence of events. We will analyse the notes and records carefully to piece together a chronology of events and look at what treatment was (or was not) provided. Subject to that review, it is then likely to be the case that we will instruct  an independent expert or experts to comment on the care provided, and whether any poor care identified has been causative of the injury or damage in question.

Our team includes members of the Law Society’s specialist panel of clinical negligence solicitors and the Action against Medical Accidents (AvMA) solicitors panel.

You can read more in our guides on how to prove medical negligence and the medical negligence claims process.

What Can Compensation Help With?

A child who lives with kernicterus may need extensive support throughout their life. Compensation aims to put an injured person in the position they should have been in, were it not for the negligence occurring. 

This may include funds for:

• Care and support at home
• Physiotherapy
• Occupational therapy
• Speech and language therapy
• Hearing and communication support
• Specialist equipment
• Mobility aids
• Adaptations to the family home
• Suitable accommodation
• Educational support
• Transport needs
• Future loss of earnings
• Proven psychological injury
• Long-term care and support

The amount is assessed individually and will depend on the nature of the injury, the child’s current needs, and the support they are likely to require in the future.