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‘My baby was brain damaged by jaundice – help us to stop this happening again’

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Elena Kalisperas and her son Vasili

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

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“I wouldn’t wish it on anyone, but I’m glad my brain tumour happened in a way”

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Helen and Megan have both experienced cancer in different forms

After Helen Bulbeck’s daughter Megan was diagnosed with a brain tumour, the whole family was left isolated with little to no support. Now she is using this experience, plus her own journey with cancer, to help run the UK’s leading brain tumour support charity Brainstrust.

“It was at the time when Rohypnol was doing the rounds in the local pub, so I just thought maybe her drink had been spiked.”

This was Helen Bulbeck’s initial reaction to her daughter, Megan, collapsing after a night out and being omitted to A&E in 2006.

She later realised that it was the start of a lengthy battle, as MRI scans revealed Megan had a brain tumour.

To complicate matters, surgeons opted not to operate unless the tumour showed signs of developing.

And so began Megan’s monthly brain scans, all while she was completing a History of Art degree.

“University was where Megan’s priorities were,” Helen tells NR Times. “The main focus at that point was to get her epileptic episodes under control.

“We weren’t referred to a neurosurgeon until the following January – that’s six months after her first episode.

“We were completely out of our depth; we had no idea what was going on. We had been told in October that she had a brain tumour, but that was it.”

It was the lack of available support that really concerned and surprised Helen.

“There was nothing,” she says, when asked about the help they received after Megan’s diagnosis. “We were just left in a vacuum.

“That’s what I couldn’t understand, because if you’re diagnosed with breast cancer, you’re assigned a clinical nurse specialist. We didn’t have that.

“I spent a long time on the internet trying to find where the support and information was and I desperately needed to talk to somebody about the impact that this diagnosis had, but there was nobody.”

Helen was left on her own in search of a solution for Megan, spending countless hours learning more about brain tumours and possible treatments.

This led her to discover neurosurgeon Peter Black from Boston, who agreed to operate on the tumour after a consultation.

The severity of brain tumours is graded from one to four. Black was the first surgeon to tell Megan she had a grade two tumour, but it could transform into a higher grade within five years, with the consequences being potentially fatal.

With that in mind Megan decided she would have the tumour removed. Because of the risks involved with the surgery, however, the procedure was delayed until after she had finished her studies.

Through all this Helen was fighting her own battle after being told she had head and neck cancer.

She quickly underwent radiotherapy and surgery, knowing she needed to stay strong for her daughter.

“I was just focused on getting fit so that I could go with Meg to America for the surgery.”

Helen was able to make a full recovery, but then faced the challenge of funding Megan’s £30,000 surgery.

Megan’s group of friends were desperate to help and agreed to do some fundraising, eventually smashing their target and generating £70,000.

After this, things finally started to run smoothly. Megan was able to finish her degree and successfully underwent surgery in 2007 which saw her tumour removed.

“We had such a good story and we’d learned so much,” Helen says. “We thought we’ve got one of two options; we can either go back to our lives as they were and donate what we’ve got left to another charity. Or we can use those funds to set up a charity which was going to close the gap in the marketplace.

“Who do you turn to the day you’re told you have a brain tumour? There’s nobody out there and we didn’t want people to feel as lost as we did.”

From this Brainstrust was born.

Starting off simply as a helpline, the charity has evolved into a support trust with UK-wide reach, developing communities to reduce isolation, build resilience and enable people to live the life they want.

It focuses on providing evidence based information around brain tumours and its support specialists can point people to the correct resources, without forcing anything upon them.

“The only other charities that existed at that time were all to do with lab-based research, there was no charity out there where you could pick up the phone and ask for help.

“Because we have that experience, we knew what the information was that people would want to hear.

“Meg and I knew what it meant to be both a patient and a caregiver, so we used that 360 degree perspective to support others.”

Since then Brainstrust has gone on to support thousands of patients and their families.

The vast majority (93 per cent) of those that contacted the charity reported a positive outcome, with nearly 1,000 new patients engaging with it in 2019.

Since its founding in 2006, care around brain tumours has drastically improved.

It is the most common form of cancer that affects those under 40 and it is one that is rising at the fastest rate in over 65s.

Discussing how attitudes to brain tumours have changed, Helen says that new technologies can lead the way to better outcomes.

“Your first line treatment with a brain tumour should always be, where possible, neurosurgery. That was what saved our daughter’s life.

“I think the technology is absolutely key and probably until the last five years, that’s been hugely ignored, but it is catching up.

“In terms of the actual therapies, I think with radiotherapy we’ve made huge advances.”

Despite this progress, Helen says there are still huge differences between the treatment of brain tumour patients and those with other cancers and conditions.

She draws on the example of post-stroke rehab and the general care stroke survivors receive.

“Stroke patients get a wonderful wraparound reablement service and I’d love to see brain cancer having a parity.

“I find that some of the attitudes are a bit nihilistic, as in if you’re diagnosed with a glioblastoma people tend to see this as life limiting with a poor prognosis so it’s not worth investing in. I think it absolutely is.

“That’s the one thing I would love to be able to transform, the day somebody has a brain tumour,
they immediately get that same wraparound care.”

Megan is currently living a happy and healthy life since her surgery, being able to get married and gifting Helen with two granddaughters.

She still undergoes regular brain scans and, after becoming a qualified coach with Brainstrust, she is now training to become a psychodynamic psychotherapist (a discipline involving the interpretation of mental and emotional processes rather than focusing on behaviour).

Reflecting on her journey Helen describes her pride in the work they had done so far, but admits there is still much work to be done.

“It’s been a highly emotional rollercoaster at times, we get very tired but it’s not a job it’s a vocation.

“It’s important not to forget that before we’re patients, we’re people and I think the more we can get clinicians to recognise that sitting in front of them is a person not a patient, then that person is going to be much more resilient.

“Just hearing the testimonials of the impact that our work has had is what keeps us going.

“I will always remember Meg saying to me ‘I would never wish a brain tumour on anybody, but in a way I’m glad this has happened because of what we’ve achieved.’”

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Loneliness in lockdown – how have survivors been impacted?

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Loneliness in lockdown among brain injury survivors is the subject of a new research study which hopes to shine a light on the ongoing issue of isolation. 

While loneliness for the wider population was something rarely previously experienced prior to the COVID-19 pandemic, for those living with a brain injury, the everyday reality is often very different. 

And through this new study, researchers hope to discover the true effect the pandemic and its necessity for survivors to stay at home – and in some instances shield for several months – has had and how their protective factors have impacted on that. 

The project, by the University of Sunderland in conjunction with Headway, is currently gathering participants for its pioneering research, which will compare the experiences of people living with brain injury to those without. 

Led by Dr Stephen Dunne, who has a long-standing research interest in social factors which affect brain injury and stroke survivors, he hopes it will both raise awareness of the ongoing issue of loneliness many people face, as well as helping to inspire action.  

“There is a dual focus to this project – loneliness is something known to the masses now more than ever before; it’s not just something felt by a particular part of the population. For a neurotypical individual, I think it has shown what life can be like to be lonely in ways they may never have known previously. 

“An important point of our research is to try and understand how, for people with brain injury, their loneliness and their perceptions of loneliness have been affected during the pandemic – has this been heightened over the past year and been exacerbated by lockdown? 

“Or have they actually felt less lonely than neurotypical individuals, as they have had the experience pre-pandemic of adapting to life like this, and already have the support strategies in place?

“But crucially, the future of this project isn’t to define loneliness, understand its impact, then drop it – we want to understand it so that we can facilitate the removal of barriers so we can bring about strategic improvements to the wellbeing of people living with brain injury.” 

Dr Dunne and his team are seeking brain injury survivors nationally to take part in the research, which will be done by a survey: https://sunduni.eu.qualtrics.com/jfe/form/SV_czH5B8R5kieDgQR and an optional additional interview with the team remotely via Microsoft Teams. 

“We’re at a crucial stage now where we appear to be coming out of restrictions, but the experiences of the past year are still very real for so many people,” adds Dr Dunne. 

“We want to do this at the right time, before reintegration into society starts to happen and we are looking retrospectively, so we’re keen to hear the experiences of as many people as possible.

“We want to better understand loneliness and its impact, so we can help to bring about change for the future. Understanding the journey of brain injury survivors over the past year is a key part of us being able to do that.” 

For further information about the research study, or to share experiences through an interview with the research team, contact Stephen.Dunne@sunderland.ac.uk

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Temporary concussion substitutes ‘must be introduced by June 1’

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Temporary concussion substitutes must be included in the current trials underway in the Premier League to safeguard the safety of players, players’ unions said today. 

FIFPRO and the PFA have called for the introduction of temporary substitutes no later than June 1, and for the scope of the 18-month trial – which enables a team to replace a player who has sustained concussion, but on a permanent basis – be extended to include parallel trials for temporary substitutions. 

In an open letter to IFAB, football’s lawmakers, FIFPRO – which represents over 65,000 professional footballers worldwide – and the PFA highlighted the cases of West Ham United’s Issa Diop and Sheffield United’s George Baldock in making their case. 

“Player safety and welfare is paramount, and should be the only priority,” they say in their letter. 

While both bodies were supportive of the permanent concussion trials when introduced, such incidents – added to the new FIFPRO poll, which shows 83 per cent of 96 professional football club doctors at top-flight European club believe temporary substitutes should form part of future protocol – have shown that action needs to be taken. 

“In England, since the trial began, we are aware of two incidents where a temporary substitution option would have better protected players,” states the letter. 

“In each case, the players suffered from a head injury but, following an initial on-field assessment, continued to play. They were subsequently removed when it emerged their head injury was worse than first thought.

“These cases underline our concern that permanent substitutions do not give medical teams the appropriate environment to assess a player with a potentially serious head injury.

“The reality of the in-game situation is loaded with pressure. Medical teams can be presented with a situation where a globally broadcast match is on hold, awaiting their assessment. They have to make a potentially game-altering decision in a multi-billion-pound industry.

“We have no doubt medical teams act in the sole interests of the players. However, the rules do not do enough to support medical personnel. Pressure on them will be amplified with the return of crowds.”

The letter states that the inclusion of temporary concussion substitutions, which they propose should be tested in parallel with the current trial, will:

  • Provide medical teams with additional assessment time
  • Allow for the assessment to take place in an appropriate environment
  • Permit a match to restart with neither side numerically disadvantaged
  • Reduce pressure on players and medical staff to make quick decisions.

“In December 2020, we welcomed the decision by IFAB to invite competitions to trial permanent concussion substitutions,” FIFPRO and the PFA state.

“At the same time, we have remained in favour of testing temporary concussion substitutions. This has been our position for many years.

“Since the beginning of IFAB’s permanent concussion substitute trial, we have seen several incidents where the new laws of the game have fallen short of their objective and jeopardised player health and safety.”

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