‘He could have died’: family calls for better jaundice testing of non-white babies
Soon after her son Jaxson was born, Lauren Clarke spotted that his eyes were yellow and bloodshot. “We kept asking if he had jaundice, but each time we were told to keep feeding him and just put Jaxson in front of a window,” she says.
It was only when Clarke was readmitted six days later with an infection that Jaxson’s jaundice was detected by a midwife. By this time, his levels were becoming dangerously high.
“We spent a further five days in hospital for Jaxson to be treated with light therapy and antibiotics. If I hadn’t had to go back to hospital, he could have died or had serious long-term health conditions,” she says.
This week, the NHS race and health observatory will announce new funding for research into the efficacy of jaundice screening in black, Asian and minority ethnic newborns on the back of a recent report showing that tests to assess newborn babies’ health are not effective for non-white children. An interim report is planned for May 2024, with final recommendations due in November 2024.
The research cannot come too soon. Jaxson’s aunt, Gemma Poole, a midwife from Nottingham, created her company, the Essential Baby Company, to develop resources and training about the specific needs of women and babies with black and brown skins, after Jaxson’s jaundice was initially missed by clinicians.
Poole believes the trauma her nephew, brother and sister-in-law had to go through could have been avoided if health professionals had known better ways to spot jaundice in non-white babies.
“The colour of gums, the soles of the feet and hands, the whites of eyes, how many wet and dirty nappies and if the baby is waking for feeds and alert could be more reliable indicators if a black or brown baby has jaundice,” she says.
“And for cyanosis, the inside the mouth, lips and tips of fingers could be more reliable than just telling parents to look for blue or pale skin colour if the baby is black or brown. But midwives haven’t been taught what to look for in those places so it’s difficult to have a standardised approach to assessing.”
New technologies are also in the pipeline that are potentially more reliable and racially inclusive. EarMetrics is a device like a digital thermometer that, when inserted in the ear, can detect oxygen levels, cardiac function, jaundice and temperature through its highly sensitive sensors.
Nick Gompertz, a former GP and chief executive of EarSwitch, which created EarMetrics, said: “The ear canal is closer to the heart and brain and crucially has no pigment. This is likely to enable Apgar scores, cyanosis and jaundice to be more accurately diagnosed, irrespective of skin colour.”
It is still in the early stages of clinical investigation, but initial data from the University of the West of England and Queen Mary University of London suggest it provides highly accurate data. Gompertz hopes that the necessary regulatory hurdles will be reached by mid-2025, but believes it could be rolled out across the NHS earlier by partnering with existing medical device manufacturers.
Meanwhile, hospitals are becoming more proactive. Many NHS trusts routinely measure blood oxygen saturation on all newborns, using pulse oximeters. “We test every baby’s oxygen levels in our hospital, midwifery-led unit and home births, at around three hours of age,” says Sam Oddie, a consultant neonatologist at Bradford teaching hospitals foundation trust.
“Occasionally this picks up serious conditions when other tests at birth have been normal. For example, newborn babies with congenital heart disease can present with cyanosis. That is very difficult for staff and parents to notice, and is probably harder in south Asian or black babies, which is why universal pulse oximetry is so useful.
“Recently, we saw a baby who had extremely low blood oxygen levels because of a heart problem. Other routine tests did not pick this up. The pulse oximeter test undoubtedly played a role in saving that baby’s life.”
Oddie says that jaundice is much more difficult to detect, especially in south Asian babies, but points out that if parents or clinicians suspect jaundice, National Institute for Health and Care Excellence guidance stipulates that a test should be given.
He believes other areas of training need to be more diverse too.
“It is rare for neonatal life support to be taught with anything other than a white European doll. We need to have a much more diverse set of teaching aids and images so all clinicians know how different illnesses present in patients with darker skin.”
Back in Nottingham, Clarke says better training would help others avoid going through what her family did. “If the health professionals we saw had listened to our concerns or been trained correctly to include every ethnicity, it is a trauma that could have been avoided for ourselves and many other families.”
Michelle Rhodes, the chief nurse at Nottingham University Hospitals, said: “We recognise and welcome the recommendations made in the NHS race and health observatory report, and we recognise the issues and concerns that Lauren experienced in the care Jaxson received.
“Nottingham University Hospitals continue to implement the recommendations of the review into Jaxson’s care including update of guidelines and policy, staff awareness and understanding and use of new technology including bilirubinometers.”