'Doctors mistook my baby's brain tumour as teething' - Preston mum

A mum has told of her "living hell" after she was told her daughter had a life-threatening brain tumour which doctors had previously dismissed as teething.Katie, from Preston, said her daughter Poppy began having unusual episodes in 2019 after she had turned one, which included staring into space, clicking her tongue and passing out.Poppy, now six, was taken to A&E several times, but her parents said they were turned away by doctors who put the behaviour down to teething.Lancashire Teaching Hospitals NHS Foundation Trust said it was "always sorry" if patients felt concerns over any of its care, but added that some complex conditions were not always diagnosed immediately.
Katie, 36, said: "I felt completely helpless because we kept being sent home, but my gut told me there was something seriously wrong."Eventually Poppy was given an MRI scan at Royal Preston Hospital.Her parents, Katie and Colin, were told she had a shadow on her brain and "doctors weren't sure if it was a tumour or an infection".Katie said: "I felt like I was living in hell, uncertain about what was happening and terrified that my baby might die."She said it was a "frightening chapter" for the family and for Poppy's brother Jack, 10, adding: "He was deeply affected witnessing his sister's seizures."
After further tests and scans, Poppy was transferred to Manchester Children's Hospital for a biopsy. Doctors told the family she had a ganglioglioma - a rare type of brain tumour that's often slow-growing and benign. While it was not cancerous, it was causing her to experience as many as 10 seizures per day. Katie and Colin made the decision to send Poppy for surgery.
Katie said they felt as though they were waiting "years" for Poppy to have the 11-hour operation after her initial scheduled appointment was cancelled due to "a lack of high dependency beds".But in November 2019 Poppy was wheeled into the theatre and had the tumour removed. "We were beyond ecstatic, she bounced back so quickly and to see her running around just days after surgery was nothing short of miraculous, " said Katie.
Poppy has since been given the all-clear, five years after her diagnosis."Not a day goes by when we don't feel incredibly lucky," Katie said.The family wants to help others and have been fundraising for Brain Tumour Research.A Lancashire Teaching Hospitals NHS Foundation Trust spokesperson said: "If any patient has ongoing concerns about their or their child's health, their first port of call should be their GP who can refer them into the most appropriate place for assessment or treatment, which often isn't A&E."We are always sorry if patients or parents have any concerns about any aspect of their own or their child's care at any of our hospitals."We would strongly encourage them to get in touch with the Patient Advice and Liaison team who can ensure that an investigation takes place as quickly as possible."
Listen to the best of BBC Radio Lancashire on Sounds and follow BBC Lancashire on Facebook, X and Instagram and watch BBC North West Tonight on BBC iPlayer.

Try Our AI Features

Explore what Daily8 AI can do for you:

Learn with AIFact CheckingText to SpeechAI Summary

Related Articles

Scottish Sun

6 hours ago

• Scottish Sun

Doctors said my baby boy had colic – now he lives with a lifelong seizure disorder and too many brain tumours to count

Thomas, now 13, has daily seizures - sometimes lasting up to three hours at a time - and uses a wheelchair DEVASTATING IMPACT Doctors said my baby boy had colic – now he lives with a lifelong seizure disorder and too many brain tumours to count Click to share on X/Twitter (Opens in new window) Click to share on Facebook (Opens in new window) WHEN five-month-old Thomas Ward began screaming inconsolably on Valentine's Day in 2012, doctors told his mum Philippa that he likely had colic and might be teething. Nine days later, 'the bottom fell out' of Philippa's world when her son was diagnosed with a genetic disorder that causes tumours to form on numerous organs, including the brain. Sign up for Scottish Sun newsletter Sign up 6 Thomas has a genetic disorder which causes tumours to grow on his brain 6 Doctors initially told his mum Philippa that he likely had colic or was teething Thomas is now 13 and has "more tumours than doctors can count". His devastating condition impacts nearly every aspect of his life, causing developmental delays, terrifying three-hour seizures, and the need for a wheelchair. Here, Philippa, 47, a communications professional from York, tells their story… 'YOU can't possibly think Thomas is having seizures, can you?' I will never forget the response from the out-of-hours doctor when I took my then-five-month-old son to the hospital one weekend in February 2012 after he began behaving unusually, crying incessantly and making strange, jerky movements. We were dismissed and told it was likely a simple case of colic - when a baby cries a lot but there is no obvious cause - or that he might be teething. Unhappy with this outcome, and as the symptoms continued, a few days later I took Thomas to see our local GP. She agreed he was behaving unusually and wrote to the paediatrician at the local hospital. There was no indication that Thomas had a medical problem that needed to be urgently addressed, but my instincts told me otherwise. The following day, I packed a bag, took my older son Ben to nursery and walked to A&E with Thomas. Mum shares red-flag warning sign on her baby's head that turned out to be meningitis - triggering 15 seizures As soon as the doctor saw him, he diagnosed Thomas with infantile spasms - a rare and damaging form of epilepsy. He then revealed my wonderful little boy might have tuberous sclerosis complex (TSC), but he would have to be transferred to a larger hospital for an MRI scan to confirm the diagnosis. It was a terrifying time. February 29 is recognised around the world as Rare Disease Day, and it also happens to be the day Thomas was officially diagnosed with TSC, which causes tumours to form on the eyes, heart, kidneys, skin, lungs and brain. My legs gave way when we found out. It felt as though the bottom had fallen out of my world. My husband David and I learned that our son had numerous tumours on his brain and that they could cause cognitive impairment, developmental delays, behavioural problems, autism spectrum disorder, and seizures, which often cannot be adequately controlled using standard medications. We were also told that there are no approved therapies that address the root cause of TSC, so our only care options for Thomas were various therapies, symptom-based medications and possibly surgery. The days that followed were a blur. 6 Philippa, from York, says her son's condition affects their lives every single day 6 Thomas now has 'too many tumours on his brain to count' Despite an estimated one million people living with it worldwide, TSC is classified as a rare disease. If Thomas hadn't been diagnosed with it, I'd probably never have heard of it myself. Thomas underwent a few more tests before being discharged from hospital. As we were leaving, the neurologist handed us a leaflet from the Tuberous Sclerosis Association (TSA) - the UK charity dedicated to helping families affected by TSC. It felt like a strange consolation prize after receiving such a massive, life-changing diagnosis, but it became a lifeline, signposting to many of the resources and support available to us. We also joined a newly-formed Facebook group for other parents of children with TSC, and through that met some people who have gone on to become friends. But TSC continues to affect us every single day. There is nothing more heartbreaking than hearing a toddler shout: 'Seizure, seizure!' Philippa Ward Thomas is now 13, and like many people with TSC, he experiences seizures most days. At one point, Thomas was having up to eight seizures a day. Today, he typically still has at least one, usually right after waking up. They can last up to three hours at a time. He is not able to verbally communicate and has delayed motor skills. He often uses a wheelchair for outings to ensure his safety. Thomas requires regular medical scans and monitoring to track his tumours - there are now too many on his brain to count. He has been on numerous anti-epileptic medications, but none have fully relieved him from the exhausting seizures. TSC has put our entire family on a rollercoaster ride. As parents, there has been so much to learn about having a child with complex medical and developmental needs. FAMILY IMPACT It is especially difficult for us to witness the effect on our elder son, Ben. By age three, he could recognise a seizure and learned to alert us if Thomas was having one. There is nothing more heartbreaking than hearing a toddler shout: 'Seizure, seizure!' Ben, now 15, is very aware of his brother's needs. He understands the importance of being quiet in the evenings so Thomas can sleep. There are many activities we can't do as a family due to safety and accessibility issues. As a young carer, Carers UK provides him with support and resources when needed. 6 The now-13-year-old has seizures every day, sometimes lasting three hours at a time 6 He is a 'lovely young man with a vibrant personality', his mum says Despite the challenges Thomas has faced throughout his life, he remains a lovely young man with a vibrant personality and clear passions. He is a remarkable problem solver and even though he cannot speak, he is able to communicate very effectively when he wants something. He's a gentle and affectionate soul and a joy to be around. Thomas' favourite foods are chips, toast and avocado - he also loves ketchup and mayonnaise. He enjoys going on train rides, car journeys, watching YouTube videos and listening to music. His favourite person in the world is his big brother. One of the most important things we've learned since Thomas' diagnosis is the importance of community, especially one that understands your unique circumstances. What is tuberous sclerosis complex? ABOUT one million people worldwide are living with tuberous sclerosis complex, and up to 11,000 are diagnosed in the UK. It causes non-cancerous tumours to grow on the brain, as well as the eyes, heart, skin, kidneys and lungs. These tumours, which impact the central nervous system, can result in cognitive impairment, developmental delays, behavioural problems, autism, and seizures, which often can't be controlled by standard medicines. The condition can also cause skin abnormalities (such as patches of light-coloured or thickened skin, or red acne-like spots on the face), breathing difficulties, hyperactivity, kidney issues and a build-up of fluid on the brain. TSC is present from birth, although it may not cause obvious problems immediately. It is caused by changes in either the TSC1 or TSC2 gene, which are involved in regulating cell growth. There is no cure, but medicine, surgery and educational support can help. Many people with TSC will have a normal lifespan, although a number of life-threatening complications can develop. These include a loss of kidney function, a serious lung infection called bronchopneumonia and a severe type of epileptic seizure called status epilepticus. Patients may also have an increased risk of developing certain types of cancer, such as kidney cancer, but this is rare. Source: NHS Families impacted by serious conditions, especially rare diseases, often find themselves feeling isolated and alone in the weeks and months following a diagnosis. We are hugely fortunate to have our own family close by, and they are a great support to us, as is the wider TSC community around the UK and beyond. Since Thomas' diagnosis, I have done everything in my power to advocate for TSC awareness. I took part in the Great North Run to raise money for the TSA, have spoken at conferences and awareness events, shared our family's story with my workplace, and advocated for the TSC community within the NHS. There are a number of messages that I hope people take away from our family's story. Firstly, research for rare diseases like TSC is critical. While only between 3,700 and 11,000 people in the UK are diagnosed with TSC, each of these diagnoses impacts everyone in the patient's life. 'On constant alert' Having a treatment for TSC would be amazing. Thomas' frequent seizures require everyone in our house to be on constant alert. It's not easy, but Thomas is a wonderful young man, and he makes it all worthwhile. We remain hopeful that there will one day be a treatment that can improve Thomas' quality of life - and ours. I also want to remind parents of children with TSC, or any rare disease, of the importance of living in the present. When your child is diagnosed with a condition like TSC, it's understandable to ask: Why does my child have this disease? What will our future look like? We immediately begin grieving the child we thought we would have. I still don't fully understand why Thomas has TSC, but David and I are able to find tremendous joy in our lives with our son every day. The best things we can do are keep him safe, meet him where he is, help him enjoy life, and love every part of who he is. I look forward to the day when Thomas and others with TSC can access safe and effective treatment options. Until then, I am committed to making the world more inclusive and understanding.

Scottish Sun

7 hours ago

• Scottish Sun

Brit fighting for life after catching deadly disease on all-inclusive at hols hotspot

The Brit was rushed to hospital and put in an induced coma HOLS HORROR Brit fighting for life after catching deadly disease on all-inclusive at hols hotspot Click to share on X/Twitter (Opens in new window) Click to share on Facebook (Opens in new window) A BRITISH tourist is fighting for her life after catching a deadly disease while on her all-inclusive holiday in Greece. Donna Jobling, 57, from west Hull, came down with Legionnaires' disease on the island of Crete, and is in intensive care. Sign up for Scottish Sun newsletter Sign up 2 Donna Jobling, 57, of west Hull, is fighting for her life in hospital Credit: MEN Media 2 Donna was on holiday in Crete with her husband and two friends Credit: Getty She is receiving urgent treatment at Venizeleio Hospital in Heraklion after falling ill just days into the trip. Donna was holidaying with her husband Sidney and friends Paula and Nicolas Mason, also of Hull. The group had been enjoying a £1,500-per-couple all-inclusive trip when Donna fell ill. She developed a chest infection and needed lots of rest, and then became seriously ill two days later. Donna, who suffers from "complex" medical conditions including epilepsy, was taken to hospital on June 11 and doctors put her in an induced coma. Tests confirmed she had contracted Legionnaires' disease, which triggered acute respiratory failure and pneumonia. Her "devastated" family has flown out to be by her side. Neice Claire, 42, has been back-and-forth between Crete and Hull. She is currently in East Yorkshire to obtain Donna's insurance documents before flying back out. The couple was travelling with Easyjet. A spokesperson for the company said: "We're so sorry to hear that Ms Jobling is unwell, and we're continuing to support her and her family in every way we can. "As soon as we were made aware of reports of illness, we immediately took action and contacted customers who were already staying in the hotel, or due to travel in the next four weeks, to provide alternative hotel options." More to follow... For the latest news on this story keep checking back at The Sun Online is your go-to destination for the best celebrity news, real-life stories, jaw-dropping pictures and must-see video. Like us on Facebook at and follow us from our main Twitter account at @TheSun.

Daily Mirror

13 hours ago

• Daily Mirror

Parents worried over dreaded 8-words are saved from 'apocalyptic life'

Simon and Helen's daughter Ruby-Mae has severe complex needs. They say without Noah's Ark Children's Hospice, which faces rising costs, that life would be 'apocalyptic'. In 2023, Simon Morley and his partner Helen Bolger heard the words no parent wants to hear. "It was a scary moment when one of Ruby's epilepsy consultants told us, 'your daughter would benefit from the children's hospice'," Simon, 46, says. "But from the moment we walked through that door at Noah's Ark, it was such positivity and professionalism – it was an amazing set-up. We are part of the furniture now." ‌ Simon and Helen's seven-year-old daughter Ruby-Mae was diagnosed with Rett syndrome, a rare genetic neurological and developmental disorder, at the age of two-and-a-half. She has severe complex needs, uses a wheelchair and needs an eye-gaze device to communicate, as she is non-verbal. For her family, life would now be unthinkable without the hospice. ‌ "Boy, has this hospice changed all our lives," Simon, who has put his micro-brewery business on pause to become Ruby's primary carer. "Noah's Ark is like the oxygen mask on a plane, it helps us to then help Ruby. It is wrap-around care for the whole family. Ruby absolutely loves it. Without The Ark being there, her life would be so diminished, she would not be the happy girl she is. Our lives would be apocalyptic without Noah's Ark." Noah's Ark Children's Hospice has been caring for children since 2006 but this year found itself facing severe financial challenges as an unintended consequence of National Insurance rises introduced by the Treasury. There are over 50 children's hospices and 200 adult hospices in the UK, providing palliative care and end-of-life support to over 300,000 people a year. "The NI increase is expected to cost Noah's Ark approximately £100,000 per year" says CEO, Sophie Andrews OBE. "Despite this, we are committed to continuing our care for children with life-limiting and life-threatening conditions." Noah's Ark Children's Hospice says that no services are being immediately impacted. "However, this unbudgeted cost places additional strain on our ability to grow and scale our services to reach more babies, children, and young people, and their families." In 2024/25 it cost £7.1million to run the hospice – which provides paediatric palliative care via specialist nurses and carers, creative therapies, a specialist play team, and a Holiday Lodge in Mersea Island, Essex – services which already rely heavily on voluntary income. Katie and Tom Morsbach's daughter Leia is six-years-old. A big sister to brothers Robin and Dylan, Leia has mitochondrial disease and severe epilepsy. Katie and Tom are opera singers. Tom donated one of his kidneys to Leia. ‌ In 2019, the Great Ormond Street Palliative Care Team referred the family to Noah's Ark Children's Hospice. "The MRI came back at GOSH, and it was pretty bad." Katie, 37, says. "The palliative care team was in the room with us pretty much straight away, and we were handed leaflets for the hospice. It's a grieving process. You have all these hopes and dreams for your children and in one fell swoop it goes out of the window. "Leia is amazing, she's always smiling, she loves life. She has been through a lot – she's had dozens of operations and spent months at a time in hospital. She has taught us to value things in life and to make the most of the present day. We were told she had just months to live but she's beaten all expectations. ‌ "In the beginning we felt isolated, it was just awful, I couldn't even talk to my best friend or family because they didn't understand. My issues were different to other first-time mums, so chatting to parents at the hospice is a relief, it's good for your mental health. Sometimes you feel like you're going crazy, but you're not, you're just dealing with things that are really difficult. We have a hospice family link worker, who I can call up for a chat." Katie, who runs a singing and drama school, adds: "When we first heard the word, 'hospice', it sounded horrible, but when Leia attended her first music therapy session, it felt so positive – it isn't what I imagined a hospice to be. Noah's Ark supports my whole family. It is not a luxury, the hospice is a lifeline, they've helped us in good and difficult times. I think people are shocked when they hear it costs something like £18k a day to run, but if you think about the breadth of services they run, not just at the hospice, but in homes too. ‌ "I've made lots of friends, we attend mum's evening, dad night's out, my boys have made friends with other siblings. If I'm totally honest, Noah's Ark is the most important place with the most important people for us. We moved house to be closer. They give us the opportunity to create amazing memories. I've been able to leave Leia there, when I gave birth to the boys, because they can provide the specialist care Leia needs. A good few times a year, we use their respite service." Ruby's dad Simon says he and his partner Helen, 44, a commissioner for health and social care services in London, can't imagine life without Noah's Ark Children's Hospice. "Due to Ruby's severe complex needs, we're really limited on what we can do," he says. "So, we spend a lot of time here, she absolutely loves it. "They have an amazing playground that allows you to wheel the wheelchairs onto the swing, they host events, there is a play team and soft play. One of Ruby's highlights was playing on the trampoline with an Arsenal player, and she's played a bit of football with Tottenham Hotspur's women's team. Noah's Ark has a huge bank of great volunteers who come into the home, it allows me to wash up, put the laundry on and cook. The only time we feel safe leaving Ruby is with Noah's Ark or at school." ‌ A government spokesperson said: "The government recognises the incredible work that children and young people's hospices do across the country. We are investing £100 million to improve hospices' facilities and a further £26 million specifically for children's hospices this year, the biggest investment in hospices in a generation. We are also working to make sure the palliative and end of life care sector is sustainable in the long term. The decision to increase employer National Insurance contributions allowed us to increase investment in health and care by £26 billion this year." Helen says the hospice is invaluable. "We use the respite service, Ruby loves it, and for us that two-day weekend is so valuable, it allows us to be us and not carers. We spent 24 hours just sleeping and recovering, we can enjoy a meal out or the cinema and feel normal. Without the hospice we would be a wreck, and miserable." She adds: "Ruby is such a happy, sociable little girl, who loves joking around. Her care is exhausting, there is no let-up, but her smile makes it all worth-while. Before Noah's Ark, all we could see was a negative future. Now we're happy again, we smile."