EVERY day, two children will develop a liver condition, according to UK charity the Children’s Liver Disease Foundation. Once a day, someone’s baby will be diagnosed with a liver problem.
‘The public’s view is that liver disease is something that affects adults, especially binge drinkers – but not children and particularly not babies,’ says Sarah Tizzard, a clinical nurse specialist at the paediatric liver centre at King’s College Hospital, London.
‘Yet such conditions are becoming more common in young children. For example, we are now seeing fatty liver disease, which is possibly due to the rise in childhood obesity,’ she adds.
Sarah points out that much can be done to treat children and newborns found to have a liver condition. However, if the signs and symptoms are not spotted early, the effects can be devastating.
Failure to diagnose a liver condition can result in scarring or, in more severe cases, sclerosis of the liver. The damage can be so extensive that a liver transplant is required but there is also an increasing shortage of organ donors. Ultimately, there is the possibility that the child or newborn baby might die.
Sarah is all too familiar with the devastation to families caused by liver conditions. Since joining the unit five years ago she has worked closely with patients – from newborns to 18-year-olds – acting as the family’s first point of contact for information, education and support. During that time she has come across children and babies who are ‘acutely unwell’ but adds that she has also witnessed some ‘remarkable recoveries’.
Sarah has to cope with what are often extremely emotive situations but reflects she ‘would rather be doing something positive’.
‘Hopefully that means helping families to have a better outcome and a better experience. Most of the time the outcome is positive and that’s what you take away with you,’ she says.
As well as providing educational support for families who come from all over the UK to visit the centre, Sarah liaises with health visitors, community nurses, local hospitals and GPs to make sure ‘everyone is in the loop’. She is also the immediate contact for families once they go home, should they have any queries or concerns.
When a new family visits the unit Sarah tries to allay their fears. She provides them with leaflets explaining the different types of liver conditions, she discusses the sorts of procedures that might happen – blood tests, ultrasounds, liver biopsies – the kinds of medication available and how sometimes surgery might be necessary.
Her experiences have fuelled her belief that early referral is crucial and can save lives. ‘What we are finding is that the later a patient is referred to us, the more likely it is that they will require surgery,’ she says.
A barrier to early referral is that parents are unaware of warning signs, are sometimes receiving inappropriate reassurance from their GPs or health visitors, or are assuming that symptoms like jaundice are perfectly normal in newborns.
But there are danger signs, Sarah says, that healthcare professionals should be aware of, such as jaundice that persists past two weeks of age, yellow-coloured urine and pale stools in newborns – which should prompt further investigation (see box).
Keen to raise awareness about the importance of recognising and taking action on the signs and symptoms of neonatal liver disease, Sarah is backing the Yellow Alert campaign launched in October by the Children’s Liver Disease Foundation (CLDF).
Developed on behalf of families devastated by the consequences of late diagnoses and in consultation with community healthcare professionals, Yellow Alert aims to equip healthcare staff with a greater understanding of the implications of prolonged jaundice in infants. It also sets out a pathway of care to follow to enable earlier diagnosis and appropriate referral, and has the backing of the Royal College of Nursing and the Community Practitioners and Health Visitors Association.
Recent research conducted on behalf of CLDF among health visitors highlights
a need for greater understanding of the key signs and symptoms and the need for further investigation. Less than 50% knew the definition of prolonged jaundice, only 10% identified yellow urine as a sign and just 2.2% were aware that a simple blood test – the split bilirubin test – would identify the cause of prolonged jaundice as liver disease.
Sarah, who has worked with the charity to produce literature to support families, hopes the campaign’s drive to create awareness about early warning signs will give health practitioners working outside the specialty the knowledge and resources to identify problems quickly.
‘We don’t expect people to diagnose conditions. We would just like them to be aware of the symptoms, and to recommend the split bilirubin test if they come across a baby or child who has had jaundice for more than two weeks,’ she says.
‘My advice would be that if you see a jaundiced baby or child, don’t assume this is normal. Look out for the key signs and don’t be afraid to refer, because it’s better to be safe and it could save lives.’
- To support the Yellow Alert awareness campaign, CLDF is providing a free pack of resources to community health practitioners. This includes: a concise jaundice protocol, the care pathway algorithm for early identification of liver disease, a stool colour chart bookmark, a poster for health centres and surgeries and an information leaflet aimed at parents and parents-to-be. Email firstname.lastname@example.org or call 0121 212 3839 to receive a pack.
BOX 1. RECOGNISING LIVER DISEASE IN NEWBORNS
- Prolonged jaundice that persists past two weeks of age
- Jaundice that develops after a baby is born
- Yellow-coloured urine – if urine is anything other than colourless this is a symptom that needs further investigation
- Pale stools – normally the stools of a baby are green or yellow. In a baby, stools that are grey, white, fawn or pale can be an indication of liver disease
- Spontaneous bleeding – such as blood in vomit and/or stools
- Appearing tired and run-down