‘My baby was brain damaged by jaundice – help us to stop this happening again’
While Vasili Kalisperas was born a healthy baby, his undetected jaundice has left him with cerebral palsy and needing round-the-clock care. Here, his mother Elena shares her story and calls for action on kernicterus to ensure such heartbreak does not happen to more families
“When Vasili was born, he was a perfect, healthy baby. I didn’t know I was expecting a boy and we were absolutely thrilled to know have a son as well as our older daughter.
I remember gazing at him in my arms, completely on cloud nine, thinking how absolutely perfect he was, looking forward to a making a lifetime of happy memories together.
He was so strong and determined even in the hours after he was born, lifting his head up and showing such determination. I called him my ‘Little Spartan’ as he clearly had such strength inside him.
Little did I know how much that strength would be needed, as almost overnight our perfect situation became every parent’s worst nightmare.
I went home the same day as having Vasili, because I had already had a child – although that was five years previously – and I’d had a healthy pregnancy, so was deemed at low risk of anything going wrong. Vasili was checked by a paediatrician in hospital, who found nothing of concern, so we went home. A midwife then came to visit me at home, and again, nothing seemed wrong.
Little did we know that Vasili had jaundice – a condition which affects so many newborn babies and is easily treatable, but when left untreated, can have the most terrible of consequences. We first realised something was wrong with our son.
Early signs in hindsight were high pitch cry, not feeding well, lethargic, jaundice but alarm bells didn’t ring until his urine came out orange but that’s when it was too late.
In hindsight, he had a high pitched cry, wasn’t feeding well and was quite lethargic, which raised concerns – but when his urine was orange, that’s when we realised something was wrong. As a parent, you know when something isn’t right.
We went back to hospital and it became panic stations. It was a mad rush to save his life. We waited five long hours for bloods to come from Birmingham Children’s Hospital for his double exchange transfusion and didn’t know at that point if he was going to survive.
From being my perfect, happy, healthy baby, Vasili was now fighting for his life. He spent three weeks in intensive care, and thankfully won his battle for survival. But it soon became apparent he would be battling every day for the rest of his life.
We found out Vasili had kernicterus, a result of untreated jaundice caused by excess bilirubin, which can damage the brain or central nervous system.
It’s a little known condition, I had never heard of it, so I didn’t appreciate how serious it was until I saw my son connected to all those machines. I had never seen so many wires coming out of a baby.
Only days after being born a healthy baby, my son, my Little Spartan, was left with brain damage. He is profoundly deaf with little eyesight, and has Cerebral Palsy which means he cannot walk or sit unaided. He needs 24 hour care, and probably will do for the rest of his life.
The devastation this has had on our family is something I can’t really put into words. Vasili has lost any independent future he could have hoped for, and our lives as his family have all completely changed. We share our home with a team of carers and our days are a sea of medical appointments.
My relationship with my husband has come under huge strain, and we have both suffered from PTSD as a result of what we’ve been through. We see Vasili in so much pain, communicating with us only by crying when something is wrong, and it’s so very hard to cope with.
This is not how we imagined our life would be, and I have grieved for the fact that our son was such a healthy baby, but through the lack of diagnosis of what could have been a minor ailment, he is now left completely dependent.
Kernicterus is something which should not have happened to Vasili, and we want to do all we can to ensure it does not happen to any other baby and any other family. It is completely preventable and we must take the steps in our NHS to make sure it is just that.
In the US, it is treated as a ‘never event’ due to the fact it is something that simply should not happen. Screening in newborns there is routine, at which point jaundice can be picked up and a simple round of phototherapy can resolve the situation.
But by contrast, here, we have nowhere near the standard of awareness or education around jaundice. Amidst the masses of information you receive as an expectant mum, jaundice is perhaps one line in there, it’s not something you know much about or treat as serious in any way.
Through our experiences, we’ve found that even many midwives don’t know about kernicterus. This must change, or else the mistakes that were made in our case will happen again and continue to do so. Worcestershire Acute NHS Trust admitted negligence in our case, but we need change to happen on a national basis.
We know of similar situations which have happened since Vasili was born, and that is the heartbreaking thing. This is so avoidable.
We are calling for routine screening of babies to be introduced into the UK, and have started a petition to make this happen. It is so important to the health of all babies that we understand their levels of bilirubin at the earliest time, and particularly before they are discharged from hospital.
Greater education and awareness is also needed of jaundice. New mothers have little idea what they are looking for and need to be made more aware. We have heard from several mums who were so grateful for us being so vocal, or else they wouldn’t have asked the questions they did.
People don’t realise the risks around jaundice not being diagnosed and that’s at the root of the problem. Greater awareness and screening can save babies from a life of pain and trauma like my son goes through every day.
We need change to happen. This cannot wait. What happened to Vasili was preventable and we must do all we can to try and prevent it from happening again.
Visit the family’s website www.mylittlespartan.co.uk for a link to their petition
