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Less than half of maternity trusts provide device costing thousands to community midwives that could help prevent brain damage to newborns
Less than half of English NHS maternity trusts provide devices and training to community midwives that could prevent a form of brain damage in newborns, figures have revealed.
Kernicterus is a rare complication of newborn jaundice but has devastating consequences including severe cerebral palsy, blindness and deafness and learning disabilities. It is almost always preventable with urgent treatment, however midwives are not always following NICE guidelines and testing jaundiced babies urgently and referring them to hospital as quickly as they ought to be.
Handheld devices that cost just thousands can quickly identify those babies at risk of brain damage but only 51 of the 123* English maternity trusts that responded to a freedom of information request made by JMW solicitors are providing these for community midwives. This is despite community midwives being responsible for the care of most newborns who are often discharged from hospital after just a few hours.
Eddie Jones, head of medical negligence at JMW Solicitors, said his team had dealt with, or was currently investigating, 14 cases of kernicterus and almost all would have been prevented if community midwives had used a bilirubinometer when jaundice was noticed to promptly test the baby’s jaundice and then made an urgent hospital referral.
Some of the trusts involved in JMW’s cases have since purchased bilirubinometers for community midwives at a cost of thousands. This includes the Royal Berkshire NHS Foundation Trust which JMW has two kernicterus cases against, one which occurred in 2010 and one in 2012, and has since purchased 18 bilirubinometers at a cost of £28,500 in 2015/16. The cost of the specialist care required for these severely disabled children runs into millions.
Mr Jones commented: “These children were born perfectly healthy but just days later had their whole lives devastated and will often never walk, talk and will require 24-hour care for the rest of their lives.
The hardest thing for their families to come to terms with is that their injuries were preventable and some never recover from this.
“We have gathered evidence from the leading experts in kernicterus prevention who agree that if the baby had been tested promptly and referred to hospital for prompt treatment they would have made a complete recovery. Providing community midwives with bilirubinometers and appropriate training could prevent further tragedies and give the families we are representing some comfort that the chance of the same mistakes being made again has been minimised.”
Kernicterus is a rare but preventable complication of newborn jaundice, one of the most common conditions affecting newborn babies. Jaundice is of most concern if it occurs in the first 24-48 hours of life but requires monitoring at any point in the newborn period. Kernicterus occurs when levels of a substance called bilirubin, the substance that causes yellowing of the skin and eyeballs, become so high that it affects the brain and causes permanent damage.
High bilirubin levels can be treated with phototherapy or a blood transfusion and brought under control but as stated in the NICE guidelines the key is urgent and repeated testing of amounts in the blood. This can be done quickly with a bilirubinometer, which is placed briefly on the baby’s skin, or by taking a blood test and sending to a hospital lab. However, in JMW’s cases bilirubinometers were not used and blood tests were not done with enough urgency to prevent the baby from suffering catastrophic brain damage.
Vasili Kalispera, now four, was born perfectly healthy but just two days later suffered devastating and permanent kernicterus brain damage after a community midwife failed to test him and refer him to hospital when he developed severe jaundice.
Vasili cannot walk or talk and will need 24-hour care for the rest of his life. If the midwife had been equipped with a bilirubinometer and training and had ensured he was promptly tested and referred to hospital this would have been avoided.
After his case was taken on by JMW’s Eddie Jones the trust admitted negligence and has since taken steps to prevent other babies from suffering the same fate. Community midwives now have access to 12 bilirubinometers which are stored in the community midwives’ offices.
Vasili’s father Michael Kalisperas, who has campaigned for improvements in kernicterus prevention, said: “We are obviously very glad that the risk of this happening again to other babies at the same trust involved in our case has been reduced. However, it is very disappointing and worrying that so many other trusts are not ensuring their midwives are equipped with bilirubinometers which could quickly prevent another case like Vasili’s. A simple test of his jaundice and a hospital referral would have saved him and that’s something we have to live with for the rest of our lives.”
Michael would also like to see babies screened for their risk of kernicterus.
*135 NHS maternity trusts were asked for information on community midwives and their use of bilirubinometers. Data is available on request.
**Michael Kalispera is happy to discuss Vasili’s case with trusts who want more information on kernicterus prevention.
For more information or to arrange an interview please contact:
0161 828 1868 / 07921 388 584
0161 828 1981 / 07595 277 842
Note to Editors
JMW Solicitors LLP is a leading Manchester law firm and offers a broad range of legal services to both commercial and private clients.J MW’s Clinical Negligence team is headed up by leading clinical negligence lawyer, Eddie Jones. For more than a decade he and his team have advised and represented thousands of victims of clinical negligence, and their relatives, and have obtained over £100 million in compensation for their clients, as well as providing the answers as to why their medical treatment has gone wrong.