Feeling frustrated with the Government decision to not do newborn screening for levels of Jaundice that could cause Kernicterus (brain damage) THIS FLIES IN THE FACE OF EVERYTHING WE HAVE BEEN LED TO BEILIEVE THAT THEY ARE IMPROVING SYSTEMS TO PREVENT TRAGEDIES LIKE OURS HAPPEN AND ALSO CONTRADICTS THEIR OWN NHS/NICE GUIDELINES! ITS ABOUT PATIENT SAFETY
GIVE VASILI A CHANCE AND SUPPORT HIM AND CHILDREN LIKE HIM HERE http://pic-k.org/the-problem/rescue/
READ OUR STORY IF YOU WANT TO HELP PLEASE SPREAD AWARENESS AND CONTACT YOUR LOCAL MP TO ASK THE QUESTIONS WHY KERNICTERUS IS NOT A "Never Event" LIKE IT IS IN AMERICA. SILLY REASONS WHY ITS BEEN EXCLUDED HAVE BEEN BECAUSE HEALTH BOSSES FEEL IT MAY DISTURB HOME BREAST FEEDING AND EARLY DISCHARGE FROM HOSPITALS THIS IS JUST SILLY!! SO THEY ARE SAYING BRAIN DAMAGE RISKS ARE WORTH IT REGARDLESS OF SIMPLICITY OF MONITORING JAUNDICE.
Vasili was tragically diagnosed with Kernicterus after showing signs of jaundice after birth, which were left undetected by a inexperienced midwife.
Vasili was born a healthy and happy little Greek baby boy, but soon after his birth it became clear after he returned home that negligence caused him brain damage and that he would never grow up as a normal boy and the life we had planned with him and for ourselves would never be the same. We experienced what could only be described as overnight shock and heartbreak.
Vasili showed early signs of new born baby jaundice after he was born, and due to a inexperienced midwife his condition was noted but not acted on until it was too late. Now we are faced with bringing up our little boy who has been damaged by a rare condition called Kernicterus. Kernicterus has caused Vasili to suffer sight and hearing loss, spastic cerebral palsy and damage to the brain. This means he will be on a daily fight against his muscles and he could develop other problems such as bone growth problems, tendon tightening, teeth problems to name a few. The real tragedy is children with Kernicterus have whats termed as a 'locked in' life, and apart from the core brain damage that causes the main problems the rest of the brain is in affect not affected meaning he has all the abilities and intelligence of a child not affected. The reality is Kernicterus could have easily been detected and cured or even reversed if caught early on. He will now need 24hour care for the rest of his life. The very fact that he has no sight or hearing make our mission to help him that little bit harder. My wife and I do not blame the student midwife that made the mistake with Vasili but we place full blame on the NHS system that allowed her out to see us unaccompanied. There is an argument that she should have know better being a third year mature student maybe that is true but we feel that had a experience midwife come to see Vasili the situation could have been very different.
We care for our child day in, day out. He requires special medical help and treatment around the clock, which is expensive, challenging and above all emotional. Funding is difficult and we have tried so hard to make sure Vasili has everything he needs, but it is an uphill struggle. We would also like to thank Dr Andrew Gallagher a very special man who saved our sons life and who diagnosed him quickly unfortunately his efforts could not save our son entirely but we are thankful to him and his ongoing care and professionalism. Eddie Jones and Olivia Scates from JMW solicitors have also been of great help not just as solicitors but as friends and advocates in helping families connect to the help they need especially through difficult times.
Please take a moment to check out our HEROES section and deserving charities that help families around the country and in some cases the world. Without these organisations people like us would simply be lost.
Against the odds Vasili has had to fight for his life and still surprises us today with his strength and determination for a 10-month old boy – This is why we call him our ‘Little Spartan’. Our story starts here