Roy Suryo
Our daughter battled Meningitis B despite being vaccinated in a ‘very rare’ case. Noa-Rose’s parents remember vividly holding the "lifeless" youngster in their arms, and the look of fright in the doctor’s eyes. After she became critically ill in December 2022, the four-year-old spent two weeks on the high dependency ward fighting for her life. Noa-Rose’s mum, Emma, believes that while the vaccine may not completely prevent infection, it can significantly reduce how severe it becomes. Her parents from Blackwood, Caerphilly county, described how MenB wasn’t immediately diagnosed, and warned others to look out for symptoms including high fever and vomiting.
"She was so unwell that doctors were trying to stabilise her in front of us," recalled mum-of-four Emma Alderman. At this point, she remembers screaming as Noa-Rose’s breathing changed, with dad Scott saying: "I think they [the doctors] realised then that obviously she was really, really ill and the mood just changed, and you could see she was fighting for her life, and there was nothing we could do about it. It was just like ‘what is happening here?’ and without a doubt it was the worst experience in my life."
Emma said: "I can say with confidence that if Noa-Rose didn’t have the vaccines we wouldn’t have her with us now and we would have lost her." The nightmare unfolded on what seemed like a normal Saturday, after Noa-Rose had been to the park with her dad. She then started complaining of pain in her leg, which Emma put down to growing pains, so she gave her a bath. "As soon as the water hit her body she was crying out in pain and discomfort so we brought her down and let her sleep on the sofa," Emma said. But soon after, a rash started spreading over her body, while her temperature rose to 40°C – she was experiencing a severe fever.
Her parents took her to Prince Charles Hospital, Merthyr Tydfil, but doctors initially thought she had scarlet fever or Strep A, and sent her home, her parents said. Her condition quickly worsened and in the middle of the night, she started vomiting and then became unresponsive. Her parents thought it could be sepsis, but after being rushed back to hospital, a lumbar puncture confirmed she had MenB.
Meningitis B is a serious infection caused by the Neisseria meningitidis bacteria. It can lead to septicaemia (blood poisoning) and meningitis, inflammation of the membranes surrounding the brain and spinal cord. While there are many strains of meningococcal bacteria, B is the most common in the UK. It is caused by different types of bacteria, viruses, fungi, and other pathogens, and major bacterial strains include meningococcal types A, B, C, W, X and Y. Over the past year, MenB accounted for 82.6% (313 of 378) of all cases, according to UK government figures.
Babies are at high risk of MenB because they do not have immune protection from antibodies, with the disease rare in those over four. As a result, the MenB vaccine is offered to babies in three doses by the NHS, at eight weeks, 12 weeks, and one years old. The vaccine, which is given as part of the routine childhood immunisation schedule, is highly effective at preventing the most common strains of the disease.
"She’s a different child," Emma said. "You’ve gone from being a parent to a carer overnight with all these worries and all these concerns. Every time we go to a hospital appointment they tell us something else. So it’s just a whole new level of worry." Emma said it has also had a big impact on Noa-Rose, adding: "She’s having to grow up quite quickly, because of her medical needs, and it’s something that I speak to the consultants about all the time. This is the part I find difficult for her, because ultimately, she just wants to be a child."
Emma is an ambassador for Meningitis Now and has warned parents to look out for symptoms. These can start abruptly and progress rapidly, including a high fever, severe headache, vomiting, stiff neck, dislike of bright lights, and a rash that doesn’t fade when pressed. She described how a child could go from "being perfectly healthy, happy, running around, to facing a critical situation within a matter of hours." The MenB vaccine was added to the UK NHS childhood immunisation programme for babies born on or after 1 July 2015. Young babies are prioritised because they are at higher risk of invasive infections and are less able to fight them off. The vaccine is given at eight and 12 weeks, with a booster at one year – Emma confirmed Noa-Rose received all of these.
Emma is now calling for the vaccine to be rolled out to teenagers across the UK, describing a recent outbreak in Kent as "heart-shattering." She added: "I know what they’re going through and how frightening it is." Meningitis Now support worker Esme Lee explained while vaccines aren’t 100% effective, babies and young children are "much better protected" if they receive it. "Isn’t it better to be vaccinated and have that 75% chance than none at all?" she said. The charity has a "No Plan B for MenB" campaign, aiming to introduce an adolescent booster by 2030 and make the vaccine more affordable on the high street. "This is about the cost of a young person’s life, and their family’s life," she said. "How do you put a price on that?"
A spokesperson for the Welsh government outlined that the MenB vaccine is offered to babies, while the MenACWY vaccine is administered to Year 9 pupils to protect against strains A, C, W, and Y. "Following the Kent outbreak, resources and information have been shared with higher education institutions and healthcare professionals to ensure they look for the signs of meningitis and know what to do in response," they added. A spokesperson for the Cwm Taf Morgannwg health board said it was "committed to educating our teams and to continually improving the ways we identify and treat Meningitis". They urged the public to be "aware of symptoms", adding: "If Noa-Rose’s family would like to discuss any element of her care, we would encourage them to get in contact with our dedicated concerns team."
Wales Green Party spokesperson for Health and Social Care Ian Chandler said the party shares the concerns of the family, but vaccination guidance "should come from the chief medical officer based on expert advice from Public Health Wales, not politicians." A spokesperson for the Welsh Liberal Democrat said: "Ministers should look at extending MenB vaccine access to older teenagers and university students, given the current outbreak in Kent." Plaid Cymru said Wales must be "aware and alert" to public health threats and urged the government and NHS to adapt quickly and act on scientific evidence. The Welsh Conservatives and Reform UK have also been asked to comment.
The experience has left Noa-Rose with ongoing medical needs and a profound impact on her childhood. Emma speaks about the constant worry and the burden of care, noting how her daughter is growing up faster than she should due to her medical requirements. The family’s ordeal highlights the devastating consequences of meningitis, even in vaccinated individuals, and underscores the importance of continued awareness and advocacy for preventative measures. The rarity of such a severe case in a vaccinated child raises questions and fuels the ongoing campaign for broader vaccine access and further research. The emotional toll on parents Scott and Emma is immense, with Scott describing the period as the worst experience of his life. They are now dedicated to raising awareness and advocating for change, hoping to prevent other families from enduring similar heartbreak.
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