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Reversal of decision. Kernicterus affects normal children its wholly preventable.

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The UK government has just released a decision that screening for a condition called Kernicterus is not "beneficial" I find this insulting and disturbing. I’m not the only one who feels this as I have watched incidences of Kernicterus increase in the UK over the past few years. To sum it up Kernicterus is a condition that is basically a form of brain damage caused by jaundice yes jaundice that colouring of your skin you think is entirely harmless. Sadly if it goes un-detected and increases to certain levels it will cause damage and even death. The UK is behind in its stance to combat this. Little do the public know but incidences are increasing many don’t even know and its something that is preventable with screening and robust management. Sadly a combination of negligence through in-experience, ego, silly mistakes, lost opportunities, wrong medications, and historical pathological issues known and or  unknown can happen (with screening they could have) now this has added to the increased incidences. THIS HAS TO BE STOPPED. In the United States of America its deemed seriously enough to screen newborns. Its important to remind you their health system is private. It is the duty of the UK NHS for the safety of its public to carry out their due diligence on such matters ITS PATIENT SAFETY .


The body of support to families like ours in America are called PICK (Parents of Infants and Children with Kernicterus) have express entire shock at the UK and the wording and decision on the release of this news. Whilst other countries are making decisions to help solve the problem here in the UK we are effectively saying it’s practically acceptable to make a child brain damage through negligence as screening is not “beneficia"l!! WHAT!! Had screening been in place many cases would be massively be reduced and prevented.. 

Not to mention as a father of a beautiful boy affected by this who was born healthy and made severely disabled and has watched more families become affected regardless of endless reassurances from NHS trusts that they have ‘learnt lessons’ and the fact I have been apart of the NHS patient safety leads to discuss the ways to prevent this and from the back door without any warning we get this announcement?.

We need change and screening to help change, It’s common sense. This decision goes against logic and everything we have been campaigning for. If this decision takes complete hold we will only see increased incidences of Kernicterus. Wholly preventative brain damage of children like my son. He was born healthy with no problems now he screams most nights can not control his body is deaf but now has cochlear for artificial sound and has cortical visual impairment he has NO CHOICE. You do.

Please sign this petition it's important to everyone as we where a 'normal' family not affected by disability and it CAN happen to you too. This goes against logic and everything I know to be sensible. KERNICTERUS should in fact be on the NHS ’Never Events’ it has been considered on the board most years but never placed on the list for reasons you the public would be shocked. I personally will not stop until I see more common sense in patient safety systems and our beloved NHS. This may well be a top down failure of the NHS an oversight or a collateral damage acceptance? I have faith that the public, given the information and facts will agree this is negligence of a system top down. Negligence like this not just costs families and lives in such great loss and pain but its expensive to provide for carers, equipment adapted homes.

I will never see my son get married, walk, hug me, live a pain free life etc. I will see more pain and loss with reduced life expectancy. NO ONE DESERVES THIS, WAKE UP….

I want Dr Anne Mackie, Director of Programmes for the UK National Screening Committee (UK NSC), to explain why it's not beneficial and provide proof as I can't see how they can. Proof is in our children and the increased incidences that action needs to be placed to prevent this continuing. I don’t want a white wash of this. I want action…

Michael Kalisperas

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