Our Daughter's Battle with Meningitis B
Noa-Rose's parents recall vividly holding their "lifeless" daughter in their arms and noticing the fear in the doctor's eyes. In December 2022, the four-year-old was critically ill and spent two weeks on a high dependency ward fighting for her life.
She had contracted meningococcal type B meningitis despite being fully vaccinated against it.
Esme Lee, a representative from the charity Meningitis Now, described Noa-Rose's case as "extremely unfortunate" and "very, very rare," noting that since 2015, cases have dropped by 75% in infants who have been vaccinated.
Her parents, from Blackwood in Caerphilly county, shared that MenB was not immediately diagnosed and urged others to be vigilant for symptoms such as high fever and vomiting.
"She was so unwell that doctors were trying to stabilise her in front of us," recalled Emma Alderman, Noa-Rose's mother and a mother of four.
Emma remembers screaming as Noa-Rose's breathing changed. Her father, Scott, said:
"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 believes that while the vaccine may not entirely prevent infection, it can greatly reduce the severity of the illness.
"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," she said.
The ordeal began on what seemed like a normal Saturday after Noa-Rose had been to the park with her father. She then complained of leg pain, which Emma attributed to growing pains and 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.
Shortly after, a rash began spreading over her body and her temperature rose to 40°C, indicating a severe fever.
The parents took her to Prince Charles Hospital in Merthyr Tydfil, but doctors initially suspected scarlet fever or Strep A and sent her home, according to the family.
Noa-Rose's condition deteriorated rapidly; during the night she began vomiting and became unresponsive.
Her parents suspected sepsis, and after rushing her back to hospital, a lumbar puncture confirmed she had MenB.
What is Meningitis B?
Meningitis is an infection of the protective membranes surrounding the brain and spinal cord. It can be caused by various bacteria, viruses, fungi, and other pathogens. Major bacterial strains include meningococcal types A, B, C, W, X, and Y.
According to UK government data, over the past year, MenB accounted for 82.6% (313 of 378) of all meningitis cases.
Babies are at high risk of MenB because they lack immune protection from antibodies. The disease is rare in individuals over four years old.
Consequently, the MenB vaccine is offered to babies in three doses by the NHS at eight weeks, 12 weeks, and one year of age.
Teenagers are more likely to carry the bacteria in their throats than other age groups, which explains a second, smaller peak of the disease in that demographic.
Last year, a Welsh student died after contracting MenB at Bournemouth University, and earlier this month, two people died following an outbreak in Kent.
Noa-Rose, now seven years old, is among the one in five survivors left with life-altering conditions such as epilepsy, fatigue, and developmental delay.
Emma said:
"She's a different child. 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 also described the significant 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, who is an ambassador for Meningitis Now, has urged parents to watch for symptoms that can start suddenly and progress rapidly, including high fever, severe headache, and vomiting.
She described how a child can go from "being perfectly healthy, happy, running around, to facing a critical situation within a matter of hours."
The MenB vaccine was introduced 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 less able to fight them off.
The vaccine is administered at eight and 12 weeks, with a booster at one year. Emma confirmed that Noa-Rose received all these doses.
Emma is now advocating for the vaccine to be extended to teenagers across the UK, describing the recent outbreak in Kent as "heart-shattering."
"I know what they're going through and how frightening it is."
Esme Lee from Meningitis Now explained that while vaccines are not 100% effective, babies and young children are "much better protected" if vaccinated.
"Isn't it better to be vaccinated and have that 75% chance than none at all?" she said.
The charity has launched a No Plan B for MenB campaign, aiming to introduce an adolescent booster by 2030 and make the vaccine more affordable and accessible.
"This is about the cost of a young person's life, and their family's life," Lee said. "How do you put a price on that?"
Government and Health Authorities' Response
The UK and Welsh governments stated they follow advice from the Joint Committee on Vaccination and Immunisation (JCVI), which has been asked to review the Kent outbreak and provide updated guidance.
A Welsh government spokesperson outlined that the MenB vaccine is offered to babies, while the MenACWY vaccine is given 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," the spokesperson added.
A spokesperson for the Cwm Taf Morgannwg health board said the board is "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" and added:
"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 family's concerns but emphasized that vaccination guidance "should come from the chief medical officer based on expert advice from Public Health Wales, not politicians."
A Welsh Liberal Democrat spokesperson stated:
"Ministers should look at extending MenB vaccine access to older teenagers and university students, given the current outbreak in Kent."
Plaid Cymru urged Wales to remain "aware and alert" to public health threats and called on the government and NHS to adapt quickly and act on scientific evidence.
The Welsh Conservatives and Reform UK have also been approached for comment.
