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Niamh R's story

14th October 2019

After Sophie took baby daughter Niamh back to hospital for a third time in April this year, doctors finally diagnosed meningitis. Now Sophie, from Leek in Staffordshire, wants to warn other parents not to wait for a rash when their children fall ill

Niamh R's story

“Our daughter had been suffering with a cold for approximately two weeks, so we took her to our GP to make sure there was nothing obviously wrong."

"As with many illnesses, the GP advised that it takes time for a baby to overcome a cold. However, Niamh wasn’t getting any better and after much deliberation we decided to call 111 for advice."

“Niamh was very pale, hard to rouse, couldn’t keep her eyes open or her head up, had a bulging soft spot and was not taking in any fluids (which was very unlike her). A paramedic team came to our house and after taking her temperature they decided the best course of action was to take to her children’s A&E. The hospital diagnosed Niamh with a throat infection which was most likely bacterial. They advised us to return within 24hrs if she was not improving with the antibiotics they prescribed her."

“Sadly, our daughter did not show signs of getting better, so we took their advice and returned the following night. This time round we stayed in the A&E department for hours undertaking a “fluid challenge” for the Doctors to determine what might be wrong with her. It was concluded that it was most likely the throat infection and that we should continue fluids little and often at home. It was at this point that we (me and Dad) expressed our concerns that she was not herself, not improving and we felt that our concerns were being cast aside. Niamh finally drank a minimal amount of formula milk and with that, we were sent home."

“Two days later our daughter’s leg began to jitter. We called the hospital and they advised us to return for a third time. By the time we reached the children’s assessment unit, her arm was also jittering. It was then confirmed to us that she was having a seizure, which by this point had lasted for over two hours. It was then all hands on deck by medical staff taking bloods, giving medication to stop the seizures and she had a CT scan. What followed was a couple of days in CHDU (children’s High Dependency Unit) waiting for a diagnosis. It finally arrived: Niamh had meningitis and they were yet to discover it was viral or bacterial."

“Niamh was only six months old when she contracted bacterial meningitis. She had a lumbar puncture, suffered further seizures, had a continual soaring temperature and an MRI scan. After the scan we were told it was pneumococcal meningitis and that we were to expect a long period of intravenous antibiotics and to expect after effects of the disease. Niamh had collections of fluid on her brain - not too concerning at the time as they were hopeful the medication would take effect. We were transferred to the neurological team at Alder Hey (after a week in our local hospital) where she stayed under their care for another two weeks."

“During this time, she had regular bloods to check her infection levels and for the microbiologists to pin point for certain it was meningitis. Niamh was not responding to the antibiotics as quickly as they hoped so they needed to cross off other diseases such as TB and HIV. The neurology team decided to operate on Niamh to wash the fluid off her brain and use it for further testing. They concluded that she had contracted an extremely rare form of pneumococcal meningitis which explained why they were baffled by her not responding. Thankfully, we finally saw an improvement in Niamh: she was alert, drinking and her cheerful old self."

“However we noticed that she was not responding to loud noises like she would have before; most memorably a fire engine drove past her with its sirens on and she didn’t turn her head to the noise. We knew that deafness was a very common after-effect and asked her consultant for a referral to audiology. A cancellation slot came up the day before we were due to leave Alder Hey. After the team running thorough tests, the devastating news was given to us: she had lost her hearing completely in her left ear and she was severely deaf in her right ear."

“Although we knew it was likely, to actually have it said to us was so heart breaking. The following day we took Niamh home to recover, and to carry on with four more weeks of antibiotics and be assessed under our local Audiology team. Niamh was fitted with hearing aids two weeks later and we are now going through the candidacy process for Cochlear implants at the Manchester implant centre. As far as we know, Niamh has made a full recovery in all other areas, but she does take anti-epileptic medication. We will find out if she had any other lasting after effects as Niamh develops. She is responding well to the hearing aid in her right ear and is back to her old cheerful, playful, loving self which is so wonderful to see."

“If there is one thing I would say to parents/guardians, it would be to know symptoms of such illnesses, trust your instincts and don’t be afraid to express your concerns. Don’t wait for a rash to appear. You know your child better than any medical professional and you are their voice. We are so eternally grateful to everyone who looked after our daughter and to charities such as yourselves for raising awareness of this disease.”