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
Flu vaccinations to become compulsory for care staff?
Plans to introduce mandatory flu jabs could be “one step too far” for an already under-pressure sector, leaders warn
The introduction of compulsory flu vaccinations for care home staff could be “one step too far” for a sector already battling a recruitment crisis amidst the ongoing impact of COVID-19, leading professionals in the industry have told NR Times.
The Government is currently consulting with key bodies in health and social care over whether to introduce a statutory requirement for vaccination against flu as a condition of employment for frontline workers.
This follows the move to make COVID-19 double vaccination compulsory, which some forecasters predict could see up to 30 per cent of social care workers leave their roles in a sector already struggling to meet the soaring demand for its services, with an existing and growing shortfall of at least 80,000 staff nationally.
The consultation, which concludes next week, is likely to be met with “fury and outrage” by care operators, many of whom have battled to stay afloat over the past 18 months with mounting staffing and financial challenges.
SAGE has advised that the combination of flu and COVID-19 could make this winter more of a threat than ever before to the most vulnerable people, particularly those in specialist care environments, and that vaccination is a tool in preventing the transmission of both.
In its consultation paper, titled ‘Making vaccination a condition of deployment in the health and wider social care sector’, the Department of Health and Social care says that flu vaccine uptake among social care workers in care homes was around 33 per cent last year – including 48 per cent for those directly employed and 36 per cent for those employed through an agency – which is significantly lower than uptake of the COVID-19 vaccine.
But for operators already under pressure to meet the needs of their residents while losing staff over the COVID-19 vaccination issue, the worry is that more leaving the profession over the compulsory flu jab may tip the balance.
One senior figure in a care operator, who wished to remain anonymous, told NR Times: “This is one step too far, particularly so soon after we’ve been forced to lose good people because of the COVID vaccination.
“Smaller operators are struggling to stay afloat. We’re doing all we can but these are very difficult times. People say we’re through the worst, and in some ways that is true, but the staffing situation is getting worse. By forcing more people out of the sector, the future is very worrying.”
Paul TM Smith – consultant to Renal Health Ltd and a leading name in specialist care, who is also part of the Royal College of Nursing’s older people’s forum – confirmed to NR Times that the RCN was invited to be part of the consultation.
“The recent report from MPs (Coronavirus: lessons learned to date) highlighted many failures in the Government’s handling of COVID, but also showed the success of the vaccination programme. There is absolute terror at the prospect of a fourth or fifth wave of COVID, particularly as we come into flu season,” he says.
“So, given that, I can understand where this approach by the Government comes from – but the situation with the COVID vaccinations has been rushed through and care homes now risk being hit again. And I can’t see it being a one-off for this year, as COVID isn’t going away.
“I think there will be fury when this becomes known, there will be outrage from many. I worry this could be one vaccination too far and I’d be hesitant to say I’m 100 per cent convinced a policy around compulsory flu vaccinations for staff would be a good thing.
“We’ve seen that clinical advice and political action can be poles apart, and the Government aren’t bound to take that advice. The implications for the sector need to be fully considered.”
While many social care workers will qualify for free flu jabs, not all will, and a lack of clarity also exists over who would have to fund compulsory vaccinations.
“If it starts costing people to be vaccinated, people who are on low pay working in very challenging conditions, then it becomes a levy. And if this falls to operators, up to 85 per cent of whom are very small operations, this will be a very significant expense for them at a time when they can’t afford any more financial pressures,” says Paul.
The care home operator adds: “For any care staff in our homes who didn’t qualify for a free flu vaccination, I couldn’t possibly allow them to pay; but then that’s yet another outlay for us. I would hope there may be some Government support there, and that they appreciate how under pressure we really are.”
Long COVID symptoms ‘typically last up to six months’
Research shows more than half of people with COVID-19 will go on to experience long-term Long COVID symptoms
More than half of the 236million people who have been diagnosed with COVID-19 worldwide since December 2019 will experience Long COVID symptoms up to six months after the initial virus, new research has revealed.
During their illnesses, many patients with COVID-19 experience symptoms such as tiredness, difficulty breathing, chest pain, sore joints and loss of taste or smell.
But its impacts, both mentally and physically, can extend into a range of further debilitating issues which can last for months – which the research team at Penn State College of Medicine saying their study findings should leave governments, healthcare organisations and public health professionals in no doubt over the scale of COVID-19 survivors who will need care for a variety of psychological and physical symptoms.
Until recently, few studies have evaluated patients’ health after recovering from the Coronavirus. To better understand the short- and long-term health effects of the virus, the researchers examined worldwide studies involving unvaccinated patients who recovered from COVID-19.
According to the findings, adults, as well as children, can experience several adverse health issues for six months or longer after recovering from COVID-19.
The researchers conducted a systematic review of 57 reports that included data from 250,351 unvaccinated adults and children who were diagnosed with COVID-19 from December 2019 through to March 2021.
The researchers analyzed patients’ health post-COVID during three intervals at one month (short-term), two to five months (intermediate-term) and six or more months (long-term).
According to the findings, survivors experienced an array of residual health issues associated with COVID-19. Generally, these complications affected a patient’s general wellbeing, mobility or organ systems.
Overall, one in two survivors experienced long-term COVID manifestations and the rates remained largely constant from one month through to six or more months after their initial illness.
Issues with general wellbeing, mobility, neurological impacts and mental health disorders all featured heavily in the long-term symptoms.
“These findings confirm what many health care workers and COVID-19 survivors have been claiming, namely, that adverse health effects from COVID-19 can linger,” said co-lead investigator Vernon Chinchilli, chair of the Department of Public Health Sciences.
“Although previous studies have examined the prevalence of Long COVID symptoms among patients, this study examined a larger population, including people in high-, middle- and low-income countries, and examined many more symptoms. Therefore, we believe our findings are quite robust given the available data.”
“The burden of poor health in COVID-19 survivors is overwhelming,” said co-lead investigator Dr. Paddy Ssentongo, assistant professor at the Penn State Center for Neural Engineering.
“Among these are the mental health disorders. One’s battle with COVID doesn’t end with recovery from the acute infection. Vaccination is our best ally to prevent getting sick from COVID-19 and to reduce the chance of Long COVID even in the presence of a breakthrough infection.”
The mechanisms by which COVID-19 causes lingering symptoms in survivors are not fully understood. These symptoms could result from immune-system overdrive triggered by the virus, lingering infection, reinfection or an increased production of autoantibodies.
According to the researchers, early intervention will be critical for improving the quality of life for many COVID-19 survivors. They said that in the years ahead, healthcare providers will likely see an influx of patients with psychiatric and cognitive problems, such as depression, anxiety or post-traumatic stress disorder, who were otherwise healthy before their COVID-19 infection.
Based on these findings, healthcare providers should plan and allocate resources accordingly in order to effectively monitor and treat these conditions, the team said.
A Chance for Life extends neurorehab in the North
The move will extend the range of patient services in the area and improves patient journeys
Neurological physiotherapy provider Neurocare Physiotherapy now falls under the umbrella of complex case management and rehabilitation specialist A Chance for Life.
The move extends the range of patient services in the North and improves patient journeys, too.
There is an inevitable challenge for any organisation delivering neuro rehab. With such a wide range of conditions to treat, it can be difficult for any organisation to build a pool of expertise large and diverse enough to service them all.
But Louise Chance, founder of A Chance for Life Ltd, the specialist in rehabilitation support work, case management, physiotherapy, occupational therapy and medico-legal reporting, has found a solution to that challenge.
Louise has combined her team’s capabilities with those of Lancashire-based Neurocare Physiotherapy.
For almost two decades, Neurocare Physiotherapy has treated patients across the North West of England for neurological conditions such as stroke, multiple sclerosis (MS), Parkinson’s, foot drop, head injury and other disorders.
For much of that time, A Chance for Life has worked in a similar space from its base in Penrith, providing support for clients who often have a variety of social, physical, mental and vocational needs.
Louise saw an opportunity to bring the two organisations together: “We saw that what we do and where we do it dovetails nicely.
“Being able to expand the range of care we offer across the North of England and Southern Scotland is so important, because it means our clients can access more of the support they need from a single source.”
Get in touch to find out more on 01768 891709.
Inpatient rehab1 week ago
QEF appeal hits £1million milestone
Interviews4 weeks ago
Emilia Clarke’s SameYou – a catalyst for change
Insight1 week ago
How housing design can improve quality of life
News4 weeks ago
Robot with ‘potential to redefine neurorehab’ unveiled by Fourier
News4 weeks ago
Webinar to assess the Rehabilitation Prescription
News4 weeks ago
Sexual trauma ‘could lead to neurological conditions’
News4 weeks ago
Zen Koh takes on global change-maker role
Brain injury3 weeks ago
Blood test set to transform detection of brain damage after head injury