Neonatal meningitis

[RewriteMyFire]

Hi, NC as possibly potentially outing

Just wondered if anyone has had experience of neonatal meningitis with their baby. My DD was born in October and have positive LP and raised inflammatory markers. She completed 2 weeks of iv antibiotics.

I’ve been terrified of the long term consequences of this so much that I’ve kind of buried my head in the sand and not wanted to talk about it. However I’m now thinking it might be helpful to talk to others who have been through similar about their experiences, so I can start to process everything. I don’t really think I’ve ‘dealt’ with it yet psychologically and it’s time I started too. It was such a traumatic event and time, I’ve even wondered if I have PTSD due to it.

DD is doing well and paediatrics follow up is looking like she might have no long term effects (but this doesn’t stop my fear and worry ).

Or does anyone know any online support groups for parents with children who sufferers neonatal meningitis (or similar?).

Thank you

[RewriteMyFire]

Excuse the terrible grammar please

[BloodyWorried]

Not quite the same, my firstborn has sepsis - there wasn’t enough fluid to gain a positive lp (they tried four different times) and had the course of antibiotics / stay on NICU. I worried daily for the first year, I didn’t see it at the time but I was clinically anxious. After a year I worried less, but it’s always there really.

I don’t know how old your dd now is, but you may benefit from a birth reflection including postnatal care - it really helped me come to terms with things. I waited way too long for it, and was anxious not over what happened and why, but blaming myself and worried what would happen if I had further children and how to protect them. The session was really helpful, and I came to terms with it all far more as a result.

[Onceuponatimethen]

I know an adult who had meningitis in utero. I know it isn’t the same, but you might be happy to hear that she has a degree and is a successful professional with no physical or mental effects as far as I know

Sending you as that sounds very hard. I wonder if your GP can help at all

[RewriteMyFire]

Thanks- sorry I should have added she is 5 months. @bloodyworried that must have been really horrible, to keep having to go for LPs and never getting a result either way- but still having the worry of the possible consequences of meningitis. Thank you for your advice. I’ve thought about a birth reflection session but honestly I think I would just get angry- I spiked a temperature during labour which wasn’t acted upon until I was septic with choreoamnionitus 4 hours later which then caused her meningitis. So I know how it happened and am furious about it. I don’t think a birth reflection would help as there was quite clearly a mistake made and an apology won’t really cut the mustard . I have considered submitting a formal complaint but until recently haven’t felt able to write about it all.

[elliejjtiny]

I had a fairly similar experience with my dc5. I had that chorio-thingy, sorry I can't spell it, which led to sepsis and ds was born with neonatal sepsis. He had a lumbar puncture which was negative but he was nearly a week old by then and he had 48 hours of iv antibiotics at birth. He is now 3y 9m.

[BloodyWorried]

I absolutely agree an apology won’t cut it - I never got an apology in the end either (a series of failings, including missed medication for my newborn). Perhaps in years to come you might decide differently, even with the anger taking it through with the notes might help. We learnt lots of things that neither my dh or I remembered. The waiting for symptoms and missed milestones certainly doesn’t help - but once she’s older it does get easier.

Hope others come forward to talk through their experiences with you.

[Rarotonga]

Hi OP
My little one didn't have meningitis but they thought he might when he was born, as his infection markers kept rising despite IV antibiotics for pneumonia. He was born in respiratory distress and whisked away from me immediately to special care. He had 4 attempted LP but they all failed.

He has just turned one. I replayed things endlessly in my head for months but it has eased somewhat over time. I haven't sought any support but I do think it would be useful.

Hope you are able to recover emotionally and that your little one is okay.

[RewriteMyFire]

Thanks Rarotonga, that must have been incredibly stressful for you too. In a way it is easier to have a LP which shows meningitis and know what you are dealing with, than have several failed LPs and never know if they actually had meningitis- and often they need the treatment anyway.
I hope he is well now?

[Rarotonga]

It was very stressful at the time. I also found it hard that some people I mentioned it to were quite dismissive, saying things like "But he's fine now, isn't he?" once we were out of hospital and he had recovered. By chance I met somebody at a baby group who had experienced a similar thing and it helped to chat to her about it.

He is really well now thank you. Hitting his milestones and a real joy.

Feel free to PM if it'd help x