Parents of newborn babies want to feel confident that their child is healthy and developing as they should. Infant jaundice is very common and, in most cases, it is a short-term condition that resolves on its own or with simple treatment. When recognised and monitored properly, it rarely causes concern.

Unfortunately, if a baby's jaundice is not identified or managed correctly it can progress to kernicterus, a rare but serious complication that can cause lasting harm. This is why early recognition and appropriate treatment are so important in protecting a baby’s health.

This guide from JMW’s medical negligence solicitors explains how kernicterus develops, the signs that parents should look out for, the factors putting babies at increased risk and the long-term effects that can affect children when jaundice is not treated early enough. By understanding the risks, families can be more aware of what to expect from medical professionals and when further action may be needed.

Understanding Kernicterus

Neonatal jaundice is common in newborn babies and occurs when bilirubin, a yellow pigment from breaking down red blood cells, builds up in the blood. Most of the time the liver processes this safely, but if levels rise too high, the liver becomes overwhelmed and the baby is at risk of serious complications.

Dangerously high bilirubin can pass into brain tissue, first causing acute bilirubin encephalopathy. Without prompt treatment this may develop into kernicterus, a rare condition that leads to permanent brain damage, also known as chronic bilirubin encephalopathy.

Kernicterus can present in different ways, and parents should be aware of the symptoms that may indicate the condition is developing. These can include:

• Yellowing of the skin and eyes: this is usually the first noticeable sign linked to severe jaundice.
• A high-pitched cry: often described as unusual or different to a baby’s normal cry.
• No startle reflex: babies may fail to react to sudden movements or sounds.
• Irritability: periods of being unsettled or difficult to soothe.
• Lethargy: unusual sleepiness, drowsiness, or difficulty waking.
• Pauses in breathing: episodes where breathing briefly stops.
• Weak muscle tone: the baby may feel floppy when held.

If treated early, kernicterus symptoms and further brain damage may be prevented. 

What Are the Risk Factors for Babies Getting Severe Jaundice?

Certain factors can make a baby more likely to develop severe jaundice, which increases the risk of developing kernicterus if the condition is not recognised and treated promptly. These include:

• Birth injuries: bruising or trauma during delivery can lead to a higher breakdown of red blood cells, which increases bilirubin levels in the baby’s blood.
• Poor feeding: babies who feed less may not pass stools as often, meaning bilirubin is not removed from the body effectively.
• Premature babies: babies born before 37 weeks often have underdeveloped livers, making it harder for their bodies to process bilirubin.
• Rhesus disease: this haemolytic disease develops when a mother with RhD-negative blood produces antibodies against her RhD-positive baby’s blood, leading to anaemia and severe jaundice.
• G6PD deficiency: a genetic condition that affects the red blood cells, as the body is unable to make enough glucose-6-phosphate dehydrogenase.

Yellowing of the skin is often the first sign of jaundice, but the pigment can appear less obvious in darker skin tones. However, yellowing in the white of the eyes can easily be identified and should be checked.

Kernicterus Long-Term Effects on A Child’s Life

With early recognition of jaundice and the right treatment, where necessary, kernicterus can usually be avoided. However, if bilirubin levels become dangerously high and treatment is delayed or inadequate, the resulting brain injury can cause lifelong disability. These effects often extend beyond physical health, affecting a child’s development, learning and quality of life, and may mean they need ongoing medical, educational and care support.

Chronic bilirubin encephalopathy

When bilirubin damages the brain and spinal cord, it can lead to cerebral palsy, a condition that affects posture, movement and muscle control. Some children may only have mild movement difficulties, while others require mobility aids, physiotherapy or long-term care. Beyond motor problems, kernicterus frequently affects cognition. Children may face delays in reaching milestones such as crawling and walking, and may experience difficulties with communication, problem-solving, memory and concentration. 

Language development is often affected, with some children experiencing delays in speech, forming sentences, or understanding others, and may need tailored educational support

Sensory impairment

Hearing loss is one of the most common complications of kernicterus, and children may need hearing aids or cochlear implants to help with their hearing development. 

Vision problems are another possible outcome, ranging from reduced sharpness of sight to more serious impairment, which can limit independence and create further developmental delays. When hearing and vision are both affected, a child’s ability to communicate and learn can be even more restricted, placing additional strain on families and carers.

Coordination and movement

Damage caused by kernicterus can also affect coordination, balance and fine motor skills. Some children may develop upward gaze palsy, where eye movement is restricted, or uncontrolled and involuntary movements known as dystonia or choreoathetosis. These symptoms can make it difficult to perform everyday tasks such as eating, dressing or writing. 

Long-term therapy, including physiotherapy, occupational therapy, and sometimes speech and language therapy, is often needed to help children build skills and independence. In more severe cases, round-the-clock care and adapted equipment may be required to support mobility and daily living.

Treatment for Kernicterus

Treatment usually begins with phototherapy, where the baby is placed under a special blue light to break down bilirubin so it can be cleared from the body. This process may take several hours or days, with the baby’s eyes protected throughout. If bilirubin levels remain too high, doctors may carry out an exchange transfusion, gradually replacing the baby’s blood with donor blood to bring levels down quickly and reduce the risk of brain damage. Both treatments require close monitoring by healthcare professionals to keep the baby safe.

Where kernicterus has already caused damage, children may need lifelong therapy and support. This often includes physiotherapy, occupational therapy, and speech and language therapy to aid their development, alongside tailored educational support. 

The effects of kernicterus can mean families face substantial long-term costs, not only for specialist therapies, but also for adjustments to their homes and daily lives. Families may need to pay for adapted housing, mobility aids, sensory equipment, and sometimes professional carers to provide round-the-clock assistance. These adjustments are often essential to give the child the best quality of life but can place a considerable financial and emotional strain on parents and carers.

Getting Help if You've Been Affected by Negligent Kernicterus Treatment

For families living with the effects of preventable kernicterus, it can feel overwhelming to know where to turn. If your baby developed kernicterus because newborn jaundice was not properly monitored or treated, you may have grounds to make a medical negligence claim.

Medical negligence arises when healthcare providers fail to take reasonable steps to protect a baby from harm. In the case of kernicterus, this may mean that jaundice was not recognised, treatment such as phototherapy was delayed, or a referral to specialist care did not take place. To establish negligence, it must be shown that a duty of care existed, that this duty was breached through substandard care, and that the breach directly led to the avoidable injury.

Compensation awarded in kernicterus claims can help families manage the considerable costs of long-term care. This may include funding for specialist therapies, mobility aids, adapted housing, assistive technology, and professional carers, as well as covering the wider financial impact of needing to adjust work and home life around a child’s needs. While no amount of money can undo the harm caused, it can provide the resources needed to give your child the best possible quality of life and relieve some of the pressures on your family.

If you are considering a kernicterus claim, your first step should be to speak to a solicitor who specialises in this area of law. We will advise you on whether we believe you have a case to make a claim for compensation, gather the necessary evidence, and manage every legal requirement on your behalf, giving you space to focus on caring for your child and family.

If you would like to understand how kernicterus can affect a child’s life and the challenges their family may face, take a look at Idris’s story..