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JMW & parents of baby Khan Gold speak out about issue of kernicterus brain damage8th January 2015 Clinical Negligence
Last week myself and the parents of a little boy I am representing in a claim for medical negligence spoke to the national and regional media about the NHS errors that caused the youngster's brain damage.
Khan Gold was born perfectly healthy but just days later his parents were given the devastating news that his brain had been damaged due to a series of errors that were made by community midwives.
The midwives failed to ensure that Khan was tested and monitored when he developed newborn jaundice. As such his levels of the substance bilirubin (which causes the yellowing of the skin and eyeballs associated with jaundice) were allowed to spiral out of control to the point that that his brain was permanently damaged.
This was completely preventable if the midwives had acted appropriately and Khan and his family will have to live with the consequences for the rest of their lives. You can read more about Khan's story on the Daily Mail website (external link).
Khan's story serves to illustrate the severe impact that the failure to test, monitor and treat high bilirubin levels can have and the timing of it being published was apt. This was because on Monday two medical announcements were made that had both positive and negative bearings on the issue of kernicterus.
The first I would like to mention is the NHS announcement that newborns are to be screened for four extra and rare conditions however kernicterus has not been included. You can read more about the new conditions that are to be screened for on the BBC website here (external link).
The conditions will be screened for with a heel prick blood test, which is the same method used to test for the rising bilirubin levels that can lead to kernicterus. Including a bilirubin test in the latest additions to the screening package offered to families would help to capture more cases where the child's bilirubin is at a concerning level and requires careful monitoring.
Although midwives should be competent in knowing when a baby should have a bilirubin test I think the NHS should give consideration to screening babies to reduce the margin for error.
The second development was publishing of a report by researchers at the University of California which found that if treatment guidelines are followed for newborn jaundice then babies are unlikely to develop kernicterus. You can read more about this on the US News website here (external link).
It's yet more proof that kernicterus is preventable. However for treatment guidelines to be followed the baby must have been tested and monitored appropriately and in the cases that myself and the rest of the JMW medical negligence team have dealt with, this is where the system has fallen down.
Awareness and understanding amongst the medical staff who attend to babies in the very early stages of their life is key. However it is unclear what concrete action is being taken by the NHS to increase this and in the meantime the potential for more tragedies is ever prevalent.
The parents of baby Khan Gold wanted to play their part in reducing that potential which is why they took the brave and difficult step of reliving their ordeal in the media. However while it is beyond doubt that they have informed many people about the risks of jaundice they need support and commitment from the NHS that it sees prevention of kernicterus as a priority.