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Noa-Rose’s Story

8th February 2023

A mum of a three-year-old who contracted group B meningococcal meningitis is sending out a message to other parents to be kind to themselves

Noa-Rose’s Story

Emma, Mum of Noa-Rose, said: “As parents we try our best to protect our children but sometimes these things are out of our control. Knowing the signs and symptoms of meningitis will help.”

“Sunday 4th December 2022 was just an ordinary day for us, my husband took our three year old little girl Noa-Rose to the park as he always does on a Sunday while I prepare the dinner. She was running around full of life and enjoying playing with the other children. She then started complaining of leg pain so we they came home and we put her in the bath thinking it was growing pains.

“As soon as the water hit her body she was crying saying it was hurting so we took her out and settled her on the sofa and she went to sleep. I carried on preparing dinner. I went to check on her, she was fast asleep but I noticed her cheeks were looking very flushed so I checked her temperature, it was 41℃.

Could see a rash

“I removed the blanket and could see a rash had appeared over her legs and body, it just looked like some kind of viral infection rash - red and blotchy.

“We took her to the hospital and after review by a paediatrician we were told she had scarlet fever and Strep A. Her temperature was still high but they sent us home with antibiotics.

“We arrived home in the early hours of Monday morning and put her to bed with us so we could keep an eye on her. She started vomiting excessively in her sleep and was difficult to wake. I knew something wasn't right but at no point considered meningitis, I thought that was an old illness and as she had been fully vaccinated it didn't cross my mind.

“I knew something wasn't right, I had this feeling I couldn't shake so we took her back to hospital. We arrived just after 8am and her vomiting got worse, she was deteriorating so fast. She was unable to stand and was floppy.

Meningococcal group B

“They admitted her to the ward and we were told she had sepsis, she was given IV antibiotics. The following day she wasn't getting any better, she became hyper sensitive to light and sound and we were having to sit in the dark, the sound of any movement was causing her distress, so the doctor was called and a lumbar puncture was carried out.

“Later that evening we got the devastating news that our little girl had bacterial meningitis. It was a further two days before we got the news that it was Meningococcal group B. I remember looking at my husband shaking my head saying; ‘no, no she can't die’.

“They increased her antibiotics to the highest dose. They did some swabs which tested positive for flu and whopping cough.

“After a few days she's started picking up. We spent two weeks in hospital before we were able to bring her home.

Hearing loss

“Since coming home we have noticed so many changes in Noa-Rose; she can't control her emotions and is having what they think is absent seizures, we are awaiting an EEG to confirm. She has hearing loss in her right ear and we are waiting for an ENT appointment to see what the next steps are, but she is alive and at one stage bringing her home didn't seem an option.

“We have other children who have really struggled, more so with not being able to see her when she was in hospital. Family were supporting them but the fear of not knowing if they would see their sister again caused so much upset. It was difficult because we had to be with our little girl so our other children were being supported by my sister, sister-law and parents. We really were living some sort of nightmare.

Be kind to yourself

“We urge everyone to know the signs, and to seek urgent medical attention if you suspect meningitis. The signs and symptoms are not always the same for everyone.

“Also be kind to yourself, if you are supporting a child or relative with meningitis, make sure you are also getting support. Meningitis Now has a fantastic support group on Facebook where people are always happy to lend a supportive ear or offer reassurance.

“I honestly don't know how we would have got through the past few weeks without Meningitis Now. The helpline has been amazing and our support officer has been fantastic with her support and reassurance. We can’t thank Meningitis Now enough.

New normal

“I hindsight we were very naïve to think that Noa-Rose’s vaccinations would have meant she would never contract meningitis. She is undergoing further tests to try and establish if she has some sort of auto immune disease and we have been told if she does it means she is at higher risk of contracting it again.

“As parent's we try our best to protect our children but sometimes these things are out of our control, knowing the signs and symptoms will help.

“We will never take anything for granted again, our story is a positive one on the fact we still have our little girl but I know others have not been so lucky. Our love goes out to everyone who has had to deal with meningitis.

“Meningitis Now has made a massive difference to us, it has helped us come to terms with our daughter’s illness and understand what this means for her and us. The support has been amazing and we are so grateful.

“Life for us is different now, we are now trying to adjust to the new 'normal' way of life and making sure our daughter gets all the support she needs."