Grace C's story

3rd August 2018

Louise’s daughter Grace, from Burton-on-Trent in Staffordshire, contracted a rare form of meningitis at just nine days old in 2007

Grace C

The family believes it is responsible for her sometimes challenging behaviour, but overall Grace has done incredibly well and is really looking forward to starting senior school soon. Louise tells their story here.

“Grace was just nine days old when she was diagnosed with a very rare form of bacterial meningitis called citrobacter. It is highly likely that she contracted this at birth, and I will always believe that the fact I had prolonged rupture of membranes was a key factor."

“The first sign that Grace was unwell was a reluctance to feed. She didn't develop a rash (her type of meningitis doesn't cause one). I was breastfeeding her so put it down to issues with that. Midwives came and went with lots of breastfeeding tips and didn't seem concerned about how pale and sleepy she was."

Diagnosed with reflux

“When I finally managed to get her to feed she then started vomiting. The midwife was still unconcerned but then a breastfeeding support worker came to see us and said she didn't like Grace's colour and we should take her to see the GP. There she was diagnosed with reflux and sent home with some medicine."

“When she continued being sick we took her to the out of hours GP. We said she was projectile vomiting and he told us that because we had used those words he would refer us to A&E. Doctors kept asking me whether she was acting normally and I didn't have a clue – she was nine days old and I was a first time mum!"

“Eventually at about 2am in the morning, after blood tests and a lumbar puncture, we were told it was bacterial meningitis. Our world fell apart. Grace was treated with IV antibiotics in hospital for the next six weeks."

Cerebral abscesses

“During that time it was discovered the type of meningitis she had was called citrobacter, which causes cerebral abscesses. Scans showed that she did have large abscesses in her brain and these resulted in her developing a condition called hydrocepahlus. Hydrocephalus can be caused by all sorts of things – spinabifida, trauma, genetic conditions etc as well as infection, and despite being fairly common it doesn't seem to be very well known about generally."

“Essentially the spinal fluid which is supposed to circulate around your brain and spine was getting trapped in Grace's head and causing raised pressure, which would be fatal if not treated. She had a VP shunt fitted to drain the fluid but unfortunately this became infected (meningitis round two) and had to be replaced after about a week."

“Her second shunt was fitted at around four months old and has been working ever since (touch wood!). She will need to have a shunt for the rest of her life but whilst it's working it doesn't impact on her life much. We just need to be careful about bumps to the head and vigilant for signs of shunt failure, such as vomiting."

Done incredibly well

“Well, that's most of the medical stuff out of the way! Compared to what could have happened Grace has done incredibly well. She attends mainstream school and does well in class – she has just passed her SATS, recently attended her year six prom and can't wait for senior school."

“Life is not always easy for her though. At one point she was diagnosed with epilepsy though thankfully has been seizure free for a few years. The brain is such a complicated thing and it’s hard to know whether meningitis and hydrocephalus have affected the way she thinks and acts. She has some unusual behaviours; she is rigid about routine, struggles in some social situations and gets very frustrated and angry. At other times she is incredibly kind and loving and utterly beautiful! She is our unique Grace!"

“We are going on a Meningitis Now Believe and Achieve weekend in October and we're really looking forward to it.”

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