Meningitis in your words

Amelia Walkden's story

  • Location: England
  • Categories: Pneumococcal
  • Age: Baby 0-1
  • Relationship: Parent
  • Outcome: Recovery with after effects
  • After effects: Learning difficulties
Amelia Walkden

In August 2017 our 9 month old baby girl became critically ill with pneumococcal meningitis and septicaemia.

She was breaking her first tooth at the time so what we originally put down to being a bit out of sorts a day or two before soon took a serious and terrifying turn.

I took her to A and E when her symptoms escalated; temperature, vomiting, mottled skin, fast breathing, lethargic... classic red flag signs. However, we were sent home with antibiotics for a suspected ear infection. I was surprised but reassured that with having medication she would soon be on the mend either way.

At home over the coming hours her temperature continued to soar into the 40.0s and she’d stopped eating and drinking entirely, let alone take those necessary antibiotics. All she wanted to do was sleep. I could no longer encourage any normal response from her, she wouldn’t be held or comforted in any way. When I tried she made a sad little cry almost like a kitten mew. I’d never heard a sound like that from her before.

"My instincts were screaming this was serious so I took the decision to go back to A and E where all hell broke loose."

My instincts were screaming this was serious so I took the decision to go back to A and E where all hell broke loose. Within the hour she’d been diagnosed with sepsis and worse still meningitis was suspected to be behind it. Not every strain is vaccinated against apparently, nor do they all display that tell-tale rash. She quickly deteriorated. Her veins collapsed as her organs struggled and soon she was completely unconscious. They performed an intraosseous (drilled into the bone in both legs) to get vital drugs into her blood system. They then decided she was so unstable she needed to be put on a ventilator. She became unrecognisable through tubes and wires and pumped full of fluid to the point where she was horrifyingly swollen. There were so many doctors and nurses around her it was hard not to feel completely terrified. A specialist team then arrived to transfer her to Manchester Children’s Hospital Intensive Care Unit which were more equipped to deal with the severity of her illness.

The next few days were a blur of consultants, procedures and consent forms. Discussions of brain damage and fear of sepsis taking her limbs were of major concern if she pulled through. Once she became a bit more stable they tried to remove her from the ventilator but she didn’t respond. Worried, they put her back on it and said the next few hours were crucial. We were living a nightmare and pleading for her to keep on fighting, just to open her tiny swollen eyes. What was worse (if possible) was her medical team explaining they had only seen a handful of cases like hers. It would be a miracle if she walked away from this unscathed we realised. The lumbar puncture was performed, results began to filter back... pneumococcal meningitis was confirmed.

But on night 4 they tried again, and this time she did begin to wake, and more than that, let herself known she was not feeling great. I don’t think I’ve ever been more relieved to see her kicking up a fuss!

We were transferred to the ward for two weeks for an intense cocktail of IV antibiotics. She needed a feeding tube and daily tests to check her organs could cope with the treatment.

But thankfully as the days went by she improved, and the neurologists became more reassured that her motor skills were returning. Despite feeling so unwell, exhausted and lacking strength she began interacting again. As soon as her 4 year old big brother came in to see her she couldn’t help but give a weak smile. Soon after she was getting up to play with him, he was just the therapy she needed.

On day 18 she was well enough to go home, although it was explained that the after effects of an illness like meningitis is a wide and complex spectrum. Over the coming months not a week went by without more tests and appointments. Being so poorly had weakened her ability to fight common illness, requiring more hospital admittances every time she became unwell. Epilepsy tests were performed for night time seizures and she has hearing damage in her right ear. Not so coincidentally going back to that original diagnosis of an ear infection on day 1, they believe that may have been the weak point this terrible illness was able to take hold of her body. There’s a possibility of learning disabilities but to what if any extent we won’t know until the coming years. She still has tired days.
However, as scary as this all seems, it’s incredible how quickly little ones can bounce back. Almost as quickly as they decline! She’s meeting all her milestones and apart from a few hiccups along the way her recovery has exceeded all expectations. It’s made us want to go out and make special memories, celebrate the little things and just appreciate fully that she was one of the lucky ones. And anything else thrown her way we know now she’ll manage.

Kirstie Gibbons
January 2018