Meningitis in your words

Leo 's story

  • Location: England
  • Categories: Meningococcal
  • Age: Baby 0-1
  • Relationship: Parent
  • Outcome: Full recovery

24 June 2019 - it was 8pm and myself and my partner Jack were playing with our little baby boy Leo, who was just short of four months old.

He was giggling away as his daddy tickled him, but fast forward an hour and everything was different. Leo had been more clingy throughout the day but I just put that down to it being a hot day and he wanting more snuggles.

By 9:15pm he was very unsettled, hot to touch, temperature was 37.8 and kept holding his breath for short periods of time. We just felt something wasn't right so we called the NHS on 111, who said a GP would call within two hours.

We gave Leo some Calpol but as the time went on he became extremely hot to touch and was groaning in his sleep, so we checked his temperature again and it had shot up to 38.5. I called 111 back and they felt he needed to be seen straight away so sent a paramedic. She was lovely and did all his observations - by this point his temperature was 38.9 and his heart rate was above 200. She decided we needed to go to the hospital quickly so requested backup, which arrived within minutes and they blue lighted us to the hospital.

When we arrived at the hospital Leo was still unsettled and his heart rate and temperature were still very high. The doctor thought it could have been viral but he didn't want to take any risks as it could have been an infection. So he had bloods taken, a lumbar puncture and a cannula put in and he was started on IV antibiotics straight away. It was awful watching and hearing him have this treatment, but we knew it was what he needed.

By the time we got to the ward his temperature had started to settle along with the heart rate. They told us the bloods would be back in the morning and the lumbar puncture would take 48 hours.

When Leo woke in the morning, he took some of his bottle (which was a good sign) and he even gave us a few smiles. He was having regular observations, and the doctors came to see us. They said that nothing showed up on the blood or urine tests, but that they would have to send them off to the lab and they would be back at the same time as the lumbar puncture results. Leo appeared to be feeling a bit better and his observations were ok, so they decided we could go home in the evening and come back on the Wednesday and Thursday for the IV antibiotics until the results were back. They explained to us that if an infection showed they may have to do more antibiotics, but if nothing showed then it would have been a viral infection, therefore the antibiotics would have been stopped. Everyone seemed hopeful that it was a viral infection, because his observations had started to return to normal and he was slowly taking his feeds better and giving us his cheeky little smiles. It was a lovely feeling to take him home on the Tuesday night in his own environment and having lots of cuddles.

"As soon as I heard the word meningitis my heart sank."

Tuesday night was a settled one for him - he slept well and woke us up to a nice smile. We were supposed to return to the hospital at 6pm on the Wednesday but at 12.45 I received a call asking us to go to the hospital as soon as possible to discuss Leo's results. We quickly packed a bag and drove to the hospital. The 20 minute drive there felt like hours and we had so many things rushing through our head. We were given a room as soon as we got to the hospital and the doctor came to see us and I could just tell by his face that something wasn't right. He explained that although the bloods didn't show anything, the lumbar puncture results had come back and showed he had an infection in the brain. The doctor confirmed that Leo has meningococcal meningitis. As soon as I heard the word meningitis my heart sank.

We were given lots of information and support from the doctor. They explained Leo would start a much higher dose of antibiotics immediately and he would be booked in for a brain scan the next day. We then had to make the dreaded phone calls to our family to let them know. How could our beautiful baby boy have meningococcal meningitis? He was just so little and innocent. We then started blaming ourselves and trying to work out where he could have picked it up from, but the doctors reassured us that it could have been from anyone and that we shouldn't think like that. Leo had to stay in that night. Myself and Jack were treated with antibiotics as well just in case.

On Thursday, Leo had the brain scan and continued with the antibiotics in the evening. His observations were still ok and the results of the brain scan came back clear so we were allowed home and had to return for the antibiotics on Friday. Going home on Thursday evening was a surreal feeling because we knew how blessed we were to be able to take our beautiful boy home.

We returned on Friday for the antibiotics and now will have the rest of the treatment from home with the community nurses.

Leo will need a hearing test soon to check for any damages and will need follow ups to check his development until he is older, but we are hopeful for a full recovery.

"We know the damage that meningitis can cause, and we are truly, truly blessed that it was caught so early."

We know the damage that meningitis can cause, and we are truly, truly blessed that it was caught so early. If the doctor hadn't requested the lumbar puncture our story could have been different, he has given our son another chance and we could never thank him enough. We are so grateful for all the staff - their support to Leo and us as a family through the worst time of our life made it that little bit easier.

Life will never be the same now, the little things we once worried about are nothing and as long as Leo is happy and healthy that is all we could wish for. We don't know just what the future holds but we have our beautiful little baby and that is the main thing. In an awful potentially life changing situation we were one of the lucky ones. Our Leo is a strong little boy and will continue to fight.

We hope sharing our story helps other people and will show that if you don't feel something is right to always go with your gut because it can save lives.

Georgia Critchley
October 2019

Detailed information about the after effects of meningitis

Vaccines are one of the most effective public health interventions in history, saving billions of lives since the first vaccine was produced in 1798. So how exactly do they work?
Stories that inspire us to create a world free from the diseases.

Whether you are living with the after effects of the diseases or coping with the death of a loved one, we are here for you.

Provide a lifeline for those in need
Provide a lifeline for those in need
£6/€7.20/$8 pays for a 30 minute call from a trained support officer.

They listen to the issues faced by someone struggling with the impact of meningitis, and provide detailed information and support.
Membership and support

The MRF Membership and Support team are here for you for any questions you might have about meningitis and septicaemia and their effects on you, or your family and friends.

Tel: Helpline UK 080 8800 3344 Ireland 1800 41 33 44

Related stories

Explore stories of individuals who have overcome meningitis and share their inspiring journeys of recovery, resilience, and hope.
Aaron Phipps MBE's full story
  • Other bacterial meningitis and septicaemia (sepsis) type
  • Teenager
Aaron Phipps MBE's story Gold medal-winning Paralympian, Aaron Phipps MBE, had to have both legs ampu...
Aidan 's full story
  • Bacterial meningitis
Aidan 's story