Reliance on the visual signs of jaundice could put babies, particularly those born prematurely and with black and brown skin, at risk of harm, the Healthcare Safety Investigation Branch (HSIB) has warned.
Jaundice is a condition that is caused by a too much bilirubin in a person’s blood. Bilirubin is a yellow substance produced when red blood cells are broken down and newborn babies are particularly susceptible due to a higher number of red blood cells. Approximately 60% of term and 80% of preterm babies develop jaundice in the first week and it usually resolves within two weeks. However, in 1 in 20 babies it is high enough to warrant treatment. HSIB explored the risk with jaundice as high levels of bilirubin left undiagnosed and untreated can lead to significant brain damage.
The investigation was triggered by a case of delayed diagnosis of jaundice in Baby Elliana, a baby girl of black African ethnicity who was born prematurely. Prior to her diagnosis, she had two blood tests that had showed high levels of bilirubin, but for several reasons they were not acted upon. She was not showing physical signs of jaundice at that time. When she was five days old, she started showing signs and a third blood test was done confirming her high levels which then prompted treatment. She made a full recovery and was discharged three days later but her case was a good example of several opportunities that were missed to detect her jaundice.
HSIB’s investigation has raised questions about the reliance and reliability of visual signs of jaundice, has examined the impact of ethnicity and emphasised that there are differing views from those that work and have expertise in this area. Other experts also commented on the fact that staff experience and the demographics of their area can have an impact for example ‘staff working in areas of England that are ethnically diverse are likely to have a heightened awareness of the need to examine areas of the body’ Their view reinforces importance of professional training, and the need for this to reflect the diversity of the population.
It is acknowledged across England that recognition is difficult, and all of those consulted through the investigation agreed that the assessment is subject and more challenging with babies who have black or brown skin. National guidance from NICE reflects that it is challenging but HSIB found that it doesn’t specify how the challenges could be addressed and does not recommend routinely measuring bilirubin in babies who are not visibly jaundiced.
One expert told the investigation that, in their opinion, a blood sample should be taken from babies with black or brown skin to test for bilirubin if admitted to a special care baby unit/intensive care unit. The NHS Race and Health Observatory also concurred with the with the view that if visual signs of jaundice are more difficult to detect in babies with black and brown skin it would be important to review the evidence to see if it indicates an alternative way of testing for bilirubin in these babies. The Observatory produced a report in 2022 that raised the possibility that routine ‘postnatal care practices’ may ‘systematically disadvantage non-white babies by delaying access to care.’
As part of the investigation, HSIB saw that some neonatal units are moving away from relying on visual signs and are introducing additional safety measures to mitigate the risk. The investigation sent out a survey to neonatal units across England and had 36 responses. The question of ‘do units routinely test bilirubin levels on blood samples taken from newborn babies?’ showed a variation in practice from guidance – for example 14% tested on admission and 25% (9) tested samples undergoing gas analysis. When explored further, responses from clinicians reinforced the concern about visual signs with one comment saying “as clinicians we are bad at assessing the level of jaundice, routinely testing makes sure a level above the treatment doesn’t get missed, especially in premature babies.”
In relation to the detection of jaundice in babies that are born prematurely and those with black and brown skin, HSIB has made one recommendation to NICE focused on reviewing its guidance in relation to reliability of signs and the risk factors identified in the investigation.
As well as the findings in relation to ethnicity, the investigation also focused on the blood testing used to detect bilirubin levels. It found that it is highly unusual practice for laboratories across the country to routinely measure bilirubin levels on neonatal blood samples found to be at risk of jaundice during their pre-analytical checks. Currently neonatal units do not see the data from a laboratory’s pre-analytical checks.
The results of the research identified a strong correlation between the levels of icterus and bilirubin (98.7%). The investigation learned that the national laboratory network would be able to confidently identify, and cascade results for newborns who were likely to be at risk of jaundice. This action would reduce the risk of a baby with high levels of bilirubin in their blood and no obvious visual signs of jaundice from going undiagnosed. As a result of our findings, two safety recommendations have been made to the Royal College of Pathologists.
Russell Evans, National Investigator says: “The possible harm a newborn baby could suffer due to delayed treatment for jaundice is a risk that is well-recognised across the country, but it is one that continues to persist. We found that the reliance on visual signs could be a contributing factor to this because they rely on subjective assessment. They may not be easily spotted or obvious, and in some cases do not appear. This becomes even more of a safety issue when looking in babies with black or brown skin, and Baby Elliana’s case illustrated this.
“As a starting point, national guidance could be updated reflect the challenges seen through our investigation and provide healthcare professionals with more detailed information on how to address these challenges. This would align with some of the changes in practice that has begun to emerge. Our survey emphasised that some neonatal units have implemented other measures and are moving away from relying on visual detection. Several of the experts and clinicians we spoke to during our investigation felt that change is needed to help to mitigate the risk of that high levels of bilirubin are present but with no obvious visual signs.
“Overall, our analysis, findings and safety recommendations all reinforce that prematurity and ethnicity have an impact on whether jaundice will be spotted and that changes need to be made to ensure that all babies have access to early treatment that reduces the risk of life-changing harm.”