MEETINGS have taken place between NHS bosses and parents of a boy left severely disabled from jaundice to ensure the same mistakes do not affect another family.
Michael and Elena Kalisperas, from Malvern, have been asked to contribute to leaflets and pamphlets for doctors and parents about the dangers of jaundice.
They have also been invited to host talks and seminars to doctors after their newborn son Vasili, now aged two, was left with cerebral palsy as well as a form of brain damage called kernicterus and is deaf and virtually blind.
The couple have been writing continuously to the NHS to campaign for kernicterus to become a never event after a lone student midwife failed to follow NICE guidelines when their son became severely jaundiced.
Guidelines state newborn babies with jaundice should be tested and referred for hospital treatment if their condition is found to be severe.
Worcestershire Acute Hospitals NHS Trust admitted liability and said it was deeply sorry for the mistakes.
Sir Bruce Keogh, the medical director of NHS England, wrote back to Mr and Mrs Kalisperas in May and they have since spoken to bosses about their concerns and how they could be prevented.
Mr Kalisperas said: "It's really good that we have got the ball rolling since we had the reply from Sir Bruce and were put in contact with the heads of NHS England.
"We're hoping something will come out of it.
"It's a sad situation and we're dealing with constant life changes for our son.
"Vasili is a beautiful boy but he has lots of problems and life's hard.
"We are going through the whole process and, as we are doing it, we are hoping something really does change.
"At the moment, they're getting together and wanting our input as and when it's needed,.
"They said we've come up with some good ideas so it is nice to know some of our angles and thoughts are being acknowledged and may help.
"I just can't imagine it staying the way it is and happening to more children."
Mr Kalisperas said they would continue to raise awareness of kernicterus so parents-to-be understood the dangers surrounding jaundice.
"It's not about scaring people but just letting them know what should happen if their child has severe jaundice.
"It would be great to eventually organise something like the ice bucket challenge for kernicterus just to make parents aware.
"I would love to do that but I have no clue how you would do it."
For more information on kernicterus, log on to kernicterus.org.uk.