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Demi A's story

16th June 2017

Rhiannon’s baby daughter Demi had a high temperature and seemed lethargic shortly after her birth in June 2012. Doctors though seemed to think that it was the mother who was ill. In fact, Demi had contracted streptococcal meningitis, which has left her with lifelong after-effects. Rhiannon, from Haverfordwest in Pembrokeshire tells their story here

Demi A's story

“Demi was three weeks old when she got meningitis.

“On the Thursday Demi seemed hot to me, so me and my husband Ian took her to the GP. She did indeed have a temperature but they said it was a viral illness and to keep her as cool as possible.

“On the Friday she continued to be too hot so we took her again to the GP who repeated the advice from the day before. I was suffering maternal psychosis and begged them, saying I was sure she seemed different. Sadly they suspected that it was more my illness than anything to do with her.

I was hospitalised

“That night I was hospitalised. In the morning my parents and my husband came to the hospital along with Demi. Demi and my dad stayed in the car while they spoke to the doctors. Thankfully it was agreed I could be allowed ward leave to take her to care on call at the main hospital. By this time it was mid afternoon on day three of her temperature.

“When we got there they suspected she had a urine infection and told me and my husband to go home and sleep (as I had not slept). We were called back at 7am by a nurse to say Demi had taken a turn for the worse in the night and we needed to get there now.

“I called my parents on the way. We were met by a nurse at the ward door. She warned us that Demi looked ill and was attached to machines. She was in the high dependency room in the children’s ward.

Didn’t feel real

“When I saw her it didn’t feel real. She was grey and swollen. They explained they suspected bacterial meningitis and had started the relevant antibiotics. They told us it was time for a lumbar puncture and that Demi was likely to scream in agony, but she didn’t – she was far too exhausted and simply let then pull her around like a doll.

“The alarms continuously sounded and mid afternoon they went off. A nurse just said ‘turn that off and let me watch her’. She did this for half a minute or so and then she called the doctors. They were discussing in front of us what to do now. They talked about airlifting her to another hospital and then I heard ‘she won’t make the journey'.

“They got a CPAP machine and attached it to her as a nurse explained they couldn’t move her as she needed oxygen now and continuously.

Sudden strength

“She was moved to SCBU and put in an incubator with oxygen flowing. Before the night came she had swatted the CPAP away. She got a sudden strength. It was amazing.

“She spent a further three days in SCBU being weaned off oxygen and then went back to the general children’s ward. She spent two weeks in total in hospital and then came back every day for a week afterwards. So, three weeks of antibiotics.

“She has unilateral hearing loss in her right side and is socially, understanding and speech and language delayed. More recently she has had Henoch-Schonlein purpura (HSP), which saw her unable to walk for five weeks and in hospital a fair bit.

Sports Day

“She is now recovering and has just had her sports day at school. The school changed things this year to be more inclusive of children like Demi. It has now been confirmed to us that Demi had streptococcal meningitis.

“Meningitis Now’s Helpline was a source of support and the charity has also helped me contact services to help Demi. I’d first heard of meningitis as my cousin died from it back in 1990. When Demi got HSP the symptoms are very similar to meningitis. She had a non-blanching rash, high temperature and then became unable to walk. The fear was crippling.

“We are still figuring out the full impact of meningitis on Demi. She is having an MRI again soon. The hearing loss and learning/social delays give us continued challenges, but overall she is amazing.”