Meningitis in your words

Elsie Rose Diamond's story

  • Location: UK
  • Categories: GBS (Group B streptococcal)
  • Age: Baby 0-1
  • Relationship: Parent
  • Outcome: Full recovery
  • After effects: None
Elsie Rose Diamond
Elsie Rose Diamond - Meningitis in your words

Elsie was born spontaneously at 27+6 weeks back in August 2020. I remember the midwife telling me they would start antibiotics incase the cause of premature labour was Group B Strep. I never really thought about it again and was thankful I was being given antibiotics to stop Elsie getting GBS.

Elsie spent the next 65 days in NICU and had a relatively smooth time during her stay. We were so excited to get her home to finally meet her brother and the rest of the family.

A week after bringing Elsie home I noticed she had not fed for around 2 hours but remember the NICU nurses telling me she would be more sleepy than a term baby as she was still not at her due date. I kept checking on her but didn't disturb her and decided to have a shower before I would wake her for a feed. By this time 4 hours had passed since I last fed her so i picked her up out of the Moses basket to feed her, only she was extremely floppy, just like a rag doll.

Due to Elsie being premature, I was already very paranoid about her and thought maybe I was imagining it. I quickly realised she wasn't waking at all and rang 111 who sent an ambulance immediately.

The paramedics checked Elsie over, but all of her observations were coming back ok! The one worrying thing was that she wouldn't wake up at all and was still very floppy. They took us into the childrens ward where the doctors met us straight away. They noticed she was breathing properly, something I hadn't even noticed, and they got to work straight away, administering antibiotics and several other medications to cover several illnesses.

As the night went on, Elsie deteriorated quite rapidly. Her breathing monitor was alarming regularly, and they had to keep helping her to breathe until they rushed her down to NICU. I'll never forget the horrendous walk following her behind while they kept calling her name and asking her to keep breathing.

Once we got to NICU they got to work on her starting heart and brain scans and other tests to see if they could determine what was wrong. Elsie's breathing got no better and she was getting tired so they came to the decision to intubate her. This would also mean she had to be transferred from the Royal United Hospital in Bath over to PICU at the Bristol Children's Hospital.
Once Elsie was stable enough they transferred her to Bristol. There was around 5 medics in the ambulance with her and, due to covid, we had to travel ourselves.

It was the worst drive I've ever had to do and felt like forever! When we finally got there, we couldn't wait to be by Elsie's side.

After 2 days we finally got the diagnosis of being late onset Group B Strep Meningitis and Sepsis. I had no idea about late onset GBS. The doctors told us they wouldn't know of any after effects this would leave her with but they would monitor her when she wakes and some after effects won't be known until she gets older.

Elsie is now 4 and has recently started school. She doesn't seem to have any lasting effects which we are so grateful for but we know this isn't always the case.

It was such a scary experience and I wish I had known more about Group B Strep and meningitis. I would say to all parents to always trust your gut if you think something is wrong and get your baby checked out.

Rhiannon Griffin
October 2024

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