Kernicterus is a rare but serious medical condition that can occur in newborn babies. It develops when a baby has very high levels of bilirubin, a yellow pigment produced when red blood cells break down. This is a particular risk factor when newborn babies develop severe jaundice, which should be measured and, if necessary, treated to minimise the risk of developing kernicterus.

When kernicterus occurs, it can lead to permanent brain damage unless it is treated urgently at an early stage. Doctors or midwives should test for and monitor bilirubin levels in a newborn baby's blood to detect and combat acute bilirubin encephalopathy, when there is evidence of newborn jaundice. If they fail to do so, the baby's red blood cells can continue to break down and lead to high levels of bilirubin that significantly increase the risk to the baby.

If a baby sustains brain damage as a result of too much bilirubin accumulating in their blood and not being treated correctly, it could be possible to seek medical negligence compensation. This can cover the child's disability needs, including the costs of any treatment, medication or long-term care they need.
Here, the expert medical negligence solicitors at JMW specialising in kernicterus claims explain what kernicterus is, the legal rights of parents whose children are affected, when it is possible to seek compensation for medical errors related to infant jaundice, and how this can make a vital difference to your child's life.

What Are Kernicterus, Bilirubin Encephalopathy and Jaundice?

Jaundice is a medical condition where the skin, the whites of the eyes, and sometimes other tissues take on a yellowish colour. This happens because of an excess of unconjugated bilirubin in the blood. Jaundice is very common in newborn babies because a baby’s liver is still immature and takes a few days to process bilirubin efficiently, and is more frequently seen in premature babies and those who are exclusively breastfed.

In most cases, newborn jaundice is mild. It normally appears within two to three days of birth, and clears within one to two weeks without treatment. However, in some cases, there is the risk of developing kernicterus if severe jaundice is not diagnosed and treated quickly. When unconjugated, bilirubin is insoluble and cannot break down, which means it can build up in blood.

Although the liver typically processes bilirubin and it leaves the body in bile, it can accumulate if the liver is not working properly, bile flow is blocked, or red blood cells are breaking down too quickly. In babies, the liver may not be developed enough to effectively deal with bilirubin.

If bilirubin accumulates to a dangerous level, it can cross into the brain tissue and cause permanent neurological damage. The consequences can include hearing loss, movement disorders such as cerebral palsy, learning disabilities, vision problems and, sadly in the most severe cases, death.

It is important to note that bilirubin encephalopathy is different from kernicterus, but the two are related. Bilirubin encephalopathy refers to the acute phase of the condition, while kernicterus describes the lasting consequences. If high bilirubin levels are identified quickly and managed through treatment such as phototherapy or exchange transfusion, the elevated bilirubin can often be reversed before it causes kernicterus.

However, when doctors or midwives fail to monitor levels of bilirubin correctly or to test the total serum bilirubin level, they may miss an opportunity for an early diagnosis. Similarly, if they miss symptoms such as a yellow tint to the baby's skin, fail to administer proper treatment as urgently as possible, or do not diagnose kernicterus when they should, the problem can get significantly worse. This may be deemed medical negligence.

What Causes Kernicterus?

The primary cause of kernicterus is untreated or poorly managed neonatal jaundice. Many babies are born with mild jaundice, which usually resolves on its own or with simple treatment such as phototherapy. Problems arise when jaundice is not identified, monitored, or treated correctly. Bilirubin can continue to build up and when too much bilirubin accumulates, it can cross the blood-brain barrier and cause damage to the brain and central nervous system.

It can be devastating when significant brain damage occurs due to excess bilirubin toxicity, particularly because it can and in most cases should be prevented. Children may be left with extensive disabilities and lifelong care needs as a result of missed symptoms of kernicterus or untreated jaundice. This can be prevented if doctors monitor and treat jaundice correctly, according to best practices and guidelines established by the National Institute for Health and Care Excellence (NICE), an organisation that provides guidance and advice to medical professionals.

Certain risk factors increase the likelihood of kernicterus developing, such as premature birth, blood group incompatibilities between mother and baby, sepsis, or underlying liver disorders. Babies with G6PD deficiency, a genetic condition that affects the red blood cells, can be particularly vulnerable.

Doctors should also be aware of these risks and work to address them during the newborn period if they are to prevent kernicterus from occurring. Inadequate medical intervention - such as failing to perform timely blood tests or provide appropriate phototherapy and exchange transfusion procedures - can allow bilirubin to reach levels high enough to damage the brain.

In these cases, a doctor, midwife or other medical professional may be held responsible for their failures.

Can I Make a Medical Negligence Claim for Kernicterus Brain Damage?

Guidelines set by NICE, provide clear recommendations on how to assess and manage jaundice in a newborn infant. If a hospital or clinician fails to follow these standards and your baby suffers avoidable harm as a result, their actions may be considered negligent. For instance, failing to recognise visible signs of jaundice, not arranging bilirubin checks when symptoms were apparent, or delaying necessary treatment could all be considered negligence and act as grounds for a legal claim.

If your child developed kernicterus or experienced harm due to chronic bilirubin encephalopathy, they could be entitled to compensation. This can cover expenses for therapies such as physiotherapy, occupational therapy, and speech and language therapy. Families may also recover the cost of equipment and adaptations, such as any mobility aids, communication devices, wheelchairs, or home modifications (like ramps, widened doorways and accessible bathrooms) that your child needs.

In cases where the child will need long-term care, compensation can fund professional carers, nursing support, or case management services to coordinate care. They may also account for the loss of future earnings if the child’s future ability to work is affected, along with the cost of special education provision. Travel expenses for attending medical appointments or relocation to a more suitable property can also be included.

How Do I Bring a Medical Negligence Claim?

Parents or guardians may be able to bring a claim for compensation if their child developed kernicterus due to medical negligence. Medical negligence means that kernicterus developed because healthcare providers did not take reasonable steps to monitor and treat neonatal jaundice, or otherwise failed to treat, prevent or diagnose kernicterus in a way that led to avoidable harm to your baby.

Such claims usually involve demonstrating three elements: that a duty of care existed, that this duty was breached through substandard care, and that the breach directly caused the injury. The duty of care is assumed in the relationship between a child and their doctor, and the breach of the duty of care means that medical negligence took place, as described above. To prove that negligence caused the brain damage, you will need to rely on expert medical evidence and specialist legal advice.

As such, your first step in making a kernicterus claim should be to speak to a solicitor. The clinical negligence team at JMW can advise you on whether we believe you can make a claim for compensation, gather evidence on your behalf, and handle all of the legal requirements of your claim so you can focus on raising your child. There are strict time limits for making a claim, so it is important to act as soon as possible to make sure your child's needs are taken care of.

To learn more about the way that kernicterus can impact a family and the difference that specialist legal support can make, take a look at Idris’s story.