Jaundice is one of the most common conditions in the first days of life, visible in roughly 60 per cent of babies born at term. In almost all babies, it is mild and passes without the need for treatment. In a very small number of cases, severe jaundice that is not recognised and treated in time can cause a form of brain injury called kernicterus. In the UK, kernicterus is rare, affecting around one in every 100,000 births, and is largely preventable through standard care for newborn babies.

If your baby had severe jaundice, and your child has since been diagnosed with cerebral palsy or hearing loss, you may be asking whether the two are connected and whether earlier testing or treatment could have prevented their injury. In this guide, JMW explains how kernicterus can cause cerebral palsy, the warning signs and risk factors doctors and midwives should respond to, and when families may have grounds to investigate a kernicterus claim or a cerebral palsy claim.

What Are Kernicterus and Cerebral Palsy?

Kernicterus is a rare but serious brain injury that can happen when severe newborn jaundice causes bilirubin levels to become dangerously high. Jaundice is very common in newborn babies and usually causes a yellow discolouration of the skin and the whites of the eyes. It happens because a baby’s liver is still developing and may not yet be able to clear bilirubin from the baby’s blood quickly enough.

Bilirubin is a yellow substance made during red blood cell breakdown. In most babies, this process is harmless, and infant jaundice will simply settle after with monitoring or simple treatment. However, if too much bilirubin builds up and is left untreated, it can become dangerous. This is why doctors, midwives and nurses should check signs of jaundice carefully and measure bilirubin levels where needed, rather than relying on visual assessment alone.

Cerebral palsy, meanwhile, is a lifelong condition that affects movement, posture and muscle tone. It is caused by an injury to, or problem with, the developing brain. Cerebral palsy can have several causes, and kernicterus is among them.

To learn more, take a look at the following guides:

• What Is Kernicterus?
• What Is Cerebral Palsy?

Can Kernicterus Cause Cerebral Palsy?

Kernicterus can cause cerebral palsy when bilirubin levels become high enough to damage the baby’s brain. Where kernicterus is the cause, children are most commonly affected by a form of the condition known as dyskinetic cerebral palsy, which can cause involuntary movements, changing muscle tone and difficulties with posture and coordination.

In simple terms, severe jaundice becomes dangerous when indirect bilirubin crosses the blood brain barrier, which usually helps protect the brain. Once bilirubin reaches the brain, it can deposit in brain tissue and affect the areas involved in movement, hearing and eye control. The early stage is known as acute bilirubin encephalopathy. When the brain injury becomes permanent, it is called kernicterus.

This is why jaundice and kernicterus are closely linked. Jaundice itself is common and usually manageable, but untreated jaundice can allow bilirubin levels to rise to potentially dangerous levels. If doctors, midwives or nurses do not recognise the risk, arrange diagnostic testing or start timely treatment, a preventable birth injury may occur.

When Does Kernicterus Lead to Cerebral Palsy?

Kernicterus can lead to cerebral palsy when severe jaundice is not measured and treated quickly enough, allowing bilirubin levels to rise to potentially dangerous levels. Not every baby with severe jaundice will develop kernicterus, but certain risk factors should prompt doctors, midwives and nurses to test sooner, monitor bilirubin levels closely and act quickly where treatment is needed.

The most common cause of kernicterus is untreated jaundice, or jaundice that is recognised too late for timely treatment to prevent brain damage. A risk factor does not mean a baby will develop kernicterus, but it should change how carefully the baby is monitored. For a more in-depth list list, see our guide to the risk factors of kernicterus.

Premature birth

Premature babies, born before 38 weeks, are at higher risk because a premature liver clears bilirubin less easily and bilirubin levels can rise quickly. The care team should monitor these babies closely and measure the baby’s bilirubin level against the correct thresholds for age and gestation. Failing to account for prematurity can raise concerns about care.

Jaundice in the first 24 hours

Jaundice within the first 24 hours is not the usual pattern and should always be treated as urgent. It can be a sign that red blood cells are breaking down too quickly, causing bilirubin to build up in the baby’s blood. NHS guidance is clear that this needs urgent testing, not reassurance. Sending a baby home to “wait and see” in these circumstances may point to a failure in care.

Blood group incompatibility

When mother and baby have different blood types, antibodies can attack the baby’s red blood cells and cause bilirubin levels to rise rapidly. This is called haemolytic disease of the newborn and includes rhesus disease and ABO incompatibility. Doctors should check the baby’s blood type and arrange the right tests where blood group incompatibility is suspected. Failing to act on abnormal test results may amount to medical negligence.

Inherited red-cell conditions such as G6PD deficiency

G6PD deficiency makes red blood cells break down more easily and can increase the risk of severe jaundice. It runs in some family backgrounds, so doctors and midwives should consider family history and ethnicity when assessing risk factors. Where a known inherited condition is missed, or testing is not arranged when it should be, this can raise concerns about the standard of care.

Poor feeding or dehydration

Babies who are not feeding well can become dehydrated, which in turn can lead to higher concentrations of bilirubin in the blood. Breastfed babies can develop jaundice while feeding is being established. This is not a reason to stop breastfeeding, but feeding concerns should be taken seriously and checks undertaken. Where there are signs of jaundice, doctors, midwives or nurses should arrange a bilirubin test rather than dismissing the symptoms.

Infection or other illness

A baby who is unwell, for example with sepsis or another serious condition, may be more vulnerable to the effects of high bilirubin levels. Doctors and midwives should look at the whole picture, including feeding, alertness, temperature, test results and visible signs of jaundice. Where illness was missed and a baby’s jaundice went unmeasured, that delay may raise concerns about whether avoidable brain injury occurred.

What Should Doctors and Midwives Do to Prevent Kernicterus from Developing Into Cerebral Palsy?

The most reassuring fact is that kernicterus is largely preventable. There is a clear standard of care for treating jaundice in newborn babies, set out in the NICE guideline on jaundice in newborn babies and the related quality standard. A baby’s care can be measured against this guidance.

Good care should involve:

• Checking for jaundice at every opportunity, especially in the first 72 hours after birth
• Checking the baby naked in bright natural light and looking at the eyes and gums, and pressing lightly on the skin for signs of jaundice on blanched skin (the baby’s forehead, nose or palms and soles of the feet)
• Being aware that jaundice may be more difficult to see in darker skin tones
• Checking for the baby’s nappies for pale chalky stools or dark urine
• Measuring bilirubin levels, rather than judging jaundice by visual appearance alone
• Using a transcutaneous bilirubinometer or a blood test for total serum bilirubin where needed
• Arranging urgent testing if jaundice appears in the first 24 hours
• Starting treatment quickly when the baby’s bilirubin level reaches the treatment threshold
• Continuing to monitor bilirubin levels during treatment, so doctors and nurses can see whether treatment is working

Phototherapy is usually the first treatment used to bring down bilirubin levels to safe levels. This involves placing the baby under a special blue light, which helps the baby’s body break down and remove bilirubin. Doctors and nurses should avoid interrupting phototherapy unless there is a clear clinical reason, as delays or gaps in treatment may allow bilirubin levels to rise again.

In more severe cases, or where phototherapy does not reduce bilirubin levels quickly enough, doctors may need to arrange an exchange transfusion. This may require some of the baby’s blood to be replaced with donor blood to remove bilirubin and reduce the risk of brain damage.

Sunlight is not a treatment for neonatal jaundice, and NICE guidance expressly states that it should not be used. Prompt testing, timely treatment and clear safety-netting advice before discharge help to prevent kernicterus.

What Are the Early Signs Parents Should Watch For?

Most newborn jaundice is not harmful, but early diagnosis matters because severe jaundice can become dangerous if bilirubin levels keep rising. If you are worried, it is reasonable to ask for a bilirubin test rather than relying on reassurance based only on how your baby looks.

The NHS guide to jaundice in babies sets out the signs of jaundice and when to get help. For more detail, see our guide to the symptoms of kernicterus.

Common signs of jaundice include:

• Yellowing of the skin, often starting on the baby’s head and face before spreading down the body, which can be harder to see on babies with darker skin tones 
• Yellowing of the whites of the eyes
• Yellow tinge to the inside of the mouth, gums, or lips
• Poor feeding
• Fewer wet nappies
• Dark urine and pale coloured stools
• Unusual sleepiness and lethargy 

Call 999 or go to A&E if a baby with jaundice shows signs that bilirubin may be affecting the brain. These include:

• Being very sleepy or hard to wake
• Not feeding, or refusing feeds
• Being floppy, stiff, or arching their back
• A high-pitched cry
• Jerking or twitching movements
• A seizure

If these signs appear, the baby should be assessed urgently. Doctors should check the baby’s bilirubin level, review any risk factors and arrange treatment where needed. Severe neonatal jaundice must be treated promptly to reduce the risk of acute kernicterus and permanent brain injury.

When Can Cerebral Palsy From Kernicterus Be Linked to Medical Negligence?

Medical negligence means that a doctor, midwife, nurse or hospital provided care that fell below a reasonable standard and caused avoidable harm. Because kernicterus is largely preventable with proper monitoring and timely treatment, cerebral palsy that follows kernicterus can raise important questions about whether the baby’s jaundice was managed correctly.

For more on how kernicterus can develop, see our guide to what causes kernicterus in newborn babies.

Concerns may arise where:

• Sunlight was recommended as a treatment for jaundice 
• Bilirubin was not measured in a baby with visible signs of jaundice
• Safety netting advice was not provided to the parents 
• A comprehensive assessment is not undertaken in a baby with darker skin
• Urgent testing was not arranged when jaundice appeared in the first 24 hours
• Known risk factors, such as premature birth, blood group incompatibility or G6PD deficiency, were missed
• Parents raised concerns about feeding, sleepiness or yellow discolouration, but were reassured without proper checks
• Test results showed that bilirubin levels were high, but treatment was not started quickly enough
• Phototherapy was interrupted or stopped too soon without proper monitoring
• Doctors did not escalate to an exchange transfusion when bilirubin levels remained dangerously high

The central question is whether the care team responded properly to the baby’s condition. If postponing treatment allowed excess bilirubin to build up in the baby’s blood and caused a lasting brain injury, this may be considered medical negligence.

What Options Do Families Have?

A medical negligence claim can help families understand whether their child’s jaundice should have been recognised, tested or treated sooner. It can also help to secure support for the child’s long-term needs where the evidence shows that avoidable failings caused or worsened the birth injury.

The first step is usually to gather the medical records. These may include maternity records, community midwifery records, neonatal records, GP records and hospital records. They can show when signs of jaundice were first recorded, whether risk factors were present, when bilirubin levels were checked, what the test results showed, and whether treatment decisions were made quickly enough.

Independent medical experts can then review the evidence. They may consider whether the care provided by doctors, midwives and nurses met a reasonable standard, and whether earlier diagnostic testing or treatment would have prevented the brain injury.

Compensation cannot undo what has happened, but it can make a meaningful difference to the practicalities of living with cerebral palsy. Depending on the child’s needs, it may help with:

• Care and support at home
• Physiotherapy, occupational therapy, and speech and language therapy
• Specialist equipment and communication aids
• Adaptations to the home
• Accessible transport
• Educational support
• Psychological support 
• Future care needs in adulthood 

A parent can usually bring a medical negligence claim on a child’s behalf before the child turns 18. Once a child turns 18, they usually have until their 21st birthday to start a claim. Different rules around time limits may apply where a person does not have the mental capacity to manage a claim for themselves.

For more information about the legal process, read our guide to how to make a medical negligence claim.