Healthcare watchdog, HSIB, has published its national investigation report, Detection of jaundice in newborn babies. The report follows HSIB’s investigation into delays in diagnosis of jaundice, a common condition in newborn babies that if left untreated can cause brain injury from kernicterus.
The report highlights that white-skinned bias and gaps in national guidance and medical education fail to support safe systems for detecting jaundice in all newborn babies, including babies who are premature or have black or brown skin.
What is jaundice?
Jaundice is a common condition which affects 60% (six out of ten) newborn babies in the first week of life. Babies who are born prematurely (before 37 weeks of pregnancy) have a higher risk of jaundice, with the condition affecting 80% (eight out of ten) premature babies.
Jaundice develops when a baby has too much bilirubin in their blood. The medical term for this condition is hyperbilirubinaemia. Bilirubin is a yellow substance that is produced during the body’s normal process of breaking down red blood cells. Bilirubin is usually processed by the liver and then passed out of the body, but may be more difficult for a newborn baby to process and excrete. If the baby’s undeveloped liver cannot fully process the high number of red blood cells that the newborn baby has at birth, dangerous levels of bilirubin can build up in their blood. Premature babies are at greater risk because their liver has had less time to develop fully.
Neonatal jaundice sometimes resolves without treatment, but it must always be diagnosed and carefully monitored, so that, if needed, treatment can take place before the bilirubin in the baby’s blood reaches unsafe levels. Excess bilirubin can cause permanent injury to the baby’s brain. This type of brain injury is called kernicterus, and can lead to severe disability from conditions such as cerebral palsy, learning disability and deafness.
You can read more about kernicterus here.
What does HSIB say about delays in diagnosis of jaundice in babies who are premature or have black or brown skin?
HSIB launched this national investigation in March 2022 to explore how ethnicity, particularly skin colour, affects the detection or diagnosis of jaundice in newborn babies. Their investigation was prompted by a case in which diagnosis of jaundice in a Black, newborn, premature baby was delayed, despite there being evidence of excessive bilirubin levels in the baby’s blood tests during the baby’s first two days of life. You can read more about the background to HSIB’s investigation here.
Guidance by the National Institute for Health and Care Excellence (NICE) highlights the risk of jaundice needing treatment in newborn and premature babies. NICE says that jaundice should be detected by visual inspection and recommends that healthcare staff examine the baby for jaundice at every opportunity, especially in the first 72 hours of life. Visual inspection should include checking the naked baby in bright, preferably natural light. Specific features of the visual examination involve checking for yellow discolouration by examining the sclera (whites of the eyes) and gums, and pressing lightly on the skin to check for signs of ‘blanched’ (or paling) skin.
According to the guidance, if a baby has visual signs of jaundice they should have a blood test to measure their bilirubin levels, but blood samples should not routinely be taken to check bilirubin in babies who do not have visible signs of jaundice.
HSIB found during their investigation that there is differing opinion about whether the use of visual signs alone provides a reliable way to detect jaundice. It can be difficult to see much of the sclera (whites of the eyes) in a newborn or premature baby, even when their eyes are open. Neonatal staff told HSIB they found trying to open the eyes of a sleeping or premature baby to check the sclera both challenging and intrusive.
Identifying visual signs of jaundice, such as yellow discolouration or paling of the skin, in newborn babies can be subjective, and becomes more challenging with babies who have black or brown skin. The NICE guidance acknowledges that clinical recognition and assessment of jaundice can be difficult, particularly in babies with darker skin tones but does not suggest different or additional checks than those recommended for babies with white skin.
The inherent white-skin bias and lack of diversity in medical literature, teaching materials and guidance has been highlighted by campaigning organisations. Skin Deep have identified that ‘the vast majority of medical textbooks and online resources only contain pictures of children or young people with light skin tones’. They also point out that descriptions of rashes tend to focus on redness or pallor, both of which may be absent or more difficult to recognise in people with darker skin. This increases the risk of diagnosis being delayed in babies and children with black and brown skin. Their research has questioned the accuracy of visual assessment as a means of detecting jaundice in babies.
HSIB found that national guidance provides no information on how to deal with the challenges of visually detecting jaundice in newborn babies with black or brown skin. In practise, neonatal staff may overcome this by looking for visual signs of jaundice in other areas of the body (in addition to those specified in the guidance), such as the baby’s lips, roof of the mouth (palate), palms of the hands and soles of the feet.
HSIB found that national guidance relating to jaundice in newborn babies may be more suited to term babies than those born prematurely. This is because the bilirubin threshold level, which indicates when treatment is needed, is lower in preterm babies than for babies born at term, and reduces further with each week of earlier gestation. This means that a premature baby whose bilirubin level is in the (need for) treatment zone may not have visible signs of jaundice.
Further concerns related to differing practises adopted by laboratory staff when reporting the results of bilirubin blood tests. Many labs do not calculate the gestational age of a baby for the purposes of the test, and therefore whether their bilirubin level is within the expected range for their stage of prematurity. Other variations in laboratory practise related to whether they set specific reference ranges for bilirubin in newborn babies; their thresholds for communicating results to neonatal units; and whether their alert that prompts them to report results showing specified levels of bilirubin to the neonatal staff by telephone is in line with national guidance.
HSIB also queried whether some neonatal staff are even aware that laboratories analyse routine neonatal blood samples to see if they indicate jaundice. If staff are not aware, they may not know to look for a comment about this on blood test reports.
HSIB recommended that NICE reviews and updates its guidance on the reliability of visual signs to detect jaundice in newborn babies, particularly those with black and brown skin, and risk factors for jaundice, including prematurity. HSIB also recommended that work should be carried out, led by Royal College of Pathologists, to promote the use of standard thresholds for reporting and communicating bilirubin test results to clinicians.
Compensation for children with cerebral palsy from kernicterus
Boyes Turner’s cerebral palsy specialists have recovered substantial compensation settlements for children who are severely disabled following kernicterus brain injury. Our expertise and experience extends to claims involving maximum severity disability in the UK and internationally.
Neonatal jaundice is treatable and, in most circumstances, a diagnosis of kernicterus suggests significant failings in neonatal care. We welcome HSIB’s call for updated and inclusive guidance and clinical training for healthcare staff in the detection of jaundice in newborn babies.
If you have been seriously injured or lost a partner or parent as a result of medical negligence, or have been contacted by the NHS’s defence team at NHS Resolution, or by HSIB/HSSIB or MNSI after maternity care, you can talk to one of our solicitors, free and confidentially, by contacting us here.