Families affected by kernicterus can find support through NHS services, local authorities, specialist charities, disability organisations and peer groups. The right combination will depend on how the brain injury has affected the child, as the long-term effects can include hearing loss, movement difficulties, cerebral palsy, feeding difficulties and other needs that may require ongoing or lifelong therapy.

There are also organisations specifically connecting families living with the effects of kernicterus, alongside broader UK charities supporting children affected by brain injury and disability.

Kernicterus is a rare but serious complication of severe neonatal jaundice. If jaundice was not recognised, properly monitored or treated in time, families may also want to understand whether medical negligence contributed to the injury. JMW's kernicterus claims service explains how we investigate these cases and the support a medical negligence claim can provide.

What support is available for families affected by kernicterus?

Support should reflect the individual child's health, development, mobility, hearing, communication, education and care needs.

Depending on the effects of the brain injury, useful support can include:

• NHS paediatric, neurological and audiology services.
• Physiotherapy, occupational therapy and speech and language therapy.
• Cerebral palsy and brain injury charities.
• Support for children with hearing loss or feeding difficulties.
• Special educational needs and disabilities (SEND) support.
• Local authority social care and short breaks.
• Financial support, disability benefits and charitable grants.
• Peer groups where parents can speak to families with similar experiences.
• Medical negligence advice where there are concerns about delayed diagnosis or treatment of severe jaundice.

The right mix of support will depend on how kernicterus has affected your child and your family. The organisations and services below can help you find practical advice, specialist support and opportunities to connect with other families, while also pointing you towards further help where needed. 

Which support groups and charities can families contact?

Families do not need to limit themselves to organisations specifically focusing on kernicterus. Many useful services focus on the effects the condition can cause, such as brain injury, cerebral palsy, hearing loss and wider disability.

Child Brain Injury Trust (CBIT)

The Child Brain Injury Trust (CBIT) supports children and families affected by acquired brain injury across the UK. Families affected by kernicterus may be able to access practical advice, education support and help adjusting to the long-term effects of a child's brain injury. JMW has supported CBIT for many years, and the charity previously supported JMW's work to raise awareness of kernicterus.

Get support from CBIT 

Brainwave

Brainwave works with children who have disabilities or additional needs, including children affected by brain injury and cerebral palsy. Its specialist therapists can help families develop individual programmes focusing on areas such as movement, communication, learning and independence. Parents and carers can approach the charity directly for support.

Explore Brainwave's support 

bibic

bibic supports children and young people with neurological and developmental difficulties, along with their families. Its services can help parents better understand a child's needs and provide practical strategies for challenges involving communication, development, sensory processing, behaviour and learning..

Get support from bibic 

Rainbow Hub

Rainbow Hub is a Lancashire-based charity supporting children and young people with physical and neurological disabilities. Its services include rehabilitation, education and family support, making it potentially useful for families dealing with mobility, development or other long-term difficulties associated with kernicterus. JMW's medical negligence team has supported the charity.

Explore Rainbow Hub's services 

Jolly Josh

Jolly Josh supports children and young people with complex medical needs and physical disabilities, as well as their families. Based in Rochdale, it provides accessible activities, opportunities for social interaction and support for parents, carers and siblings. JMW has also supported the charity, and Claire Boardman, an associate in JMW's clinical negligence team is a trustee.

See how Jolly Josh can help 

Bliss

Bliss supports families of babies who are born premature or sick and spend time receiving neonatal care. It can be particularly useful to families during the early stages of serious newborn jaundice or other neonatal health problems, offering information, emotional support and opportunities to speak to trained volunteers and other parents.

Get support from Bliss 

Family Fund

Family Fund provides grants and practical support to eligible families on lower incomes who are raising a disabled or seriously ill child. Families affected by the long-term consequences of kernicterus may be able to apply for help towards essential items and services, while the charity also provides information about benefits and other sources of financial support.

Apply for a Family Fund grant 

Newlife

Newlife helps families of disabled and seriously ill children access specialist equipment. Depending on a child's needs, this can include items such as specialist beds, wheelchairs, buggies and car seats, with equipment grants and emergency equipment loans available in some circumstances.

Get help with specialist equipment 

IPSEA

IPSEA provides free, independent information and advice about special educational needs and disabilities in England. Families whose child's kernicterus affects their learning or ability to access education can use its resources to understand SEN support, Education, Health and Care (EHC) plans, assessments and their rights if disagreements arise with a local authority or school.

Get SEND advice from IPSEA 

Cerebra

Cerebra is a UK charity for children with brain conditions and their families. It provides practical information about health, education, social care, finances and legal rights, alongside services aimed at helping families access public support.

This can be particularly useful where a child has a complex brain injury and the family is trying to coordinate several areas of support at once.

Explore support from Cerebra

Contact

Contact supports families with disabled children across the UK. Its helpline can advise parents and carers of children and young people with disabilities or additional needs, including families who do not yet have a formal diagnosis.

This makes it a useful starting point for parents who know their child needs additional support but are still working out which services may be relevant.

Visit Contact

What support can local authorities provide?

Local authorities may provide practical support for disabled children and their families. Depending on the child's needs, this can include care at home, short breaks, some aids and adaptations and access to local services.

GOV.UK explains that families can ask their council for an assessment of their child's needs. This can look at health, social care and education together. The council's Local Offer should also set out SEND services available locally.

Read GOV.UK guidance on help if you have a disabled child

If kernicterus affects a child's learning, communication, hearing or physical access to education, they may receive SEN support through nursery or school. Some children may need an Education, Health and Care plan where their needs require more coordinated provision.

Local support can become particularly important as children affected by kernicterus grow. A family may initially need help with therapy and appointments, but later need support with education, communication technology, mobility equipment, home adaptations or greater independence.

When may medical negligence advice be relevant?

Kernicterus is different from a brain injury caused directly by birth trauma. It develops when severe neonatal jaundice allows bilirubin to reach harmful levels and damage the brain.

Medical negligence concerns may arise where a doctor, midwife or nurse did not identify warning signs, arrange appropriate testing, respond to known risk factors or provide timely treatment.

Examples may include:

• Failing to recognise severe jaundice or early signs of deterioration.
• Not measuring bilirubin when the baby's jaundice required investigation.
• Failing to use total serum bilirubin testing where required.
• Not responding appropriately to poor feeding, unusual sleepiness or other concerns raised by parents.
• Failing to account for an increased risk in premature babies or babies with haemolytic conditions.
• Incorrect monitoring or a delayed diagnosis despite rising bilirubin levels.
• Delaying phototherapy or an exchange transfusion when treatment was indicated.

NHS Resolution has published learning from neonatal jaundice medical negligence claims showing how failures to respond to parental concerns, measure bilirubin promptly and use the correct treatment chart can contribute to avoidable harm.

Read the NHS Resolution learning resource on neonatal jaundice

A kernicterus diagnosis does not by itself prove medical negligence. We investigate the care provided by the relevant healthcare provider, such as an NHS trust or private hospital, and obtain independent medical evidence. This helps establish whether the care fell below a reasonable standard and whether different care would probably have prevented or reduced the brain injury.

Where medical negligence has caused or worsened a serious brain injury, a claim can take account of the child's individual long-term needs. Depending on the effects, these can include care, therapy, specialist equipment, accommodation, education and other support. Our wider work on serious birth injuries considers these needs as part of the legal process.

You can read more about what causes kernicterus in newborn babies, how jaundice can lead to kernicterus and the medical negligence claims process.

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