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Sophia S's meningitis story

26th February 2021

Joanna and Chris’s young daughter Sophia had suffered her first illness but appeared to have recovered well. However, whilst on a Christmas shopping trip, her parents became worried and trusting their ‘gut feeling’ contacted doctors

Sophia S's story

It was a good thing they did, because Sophia had contracted meningitis and went downhill quickly, as Joanna, from Belfast, tells us here.

“Sophia was 3 months old and had had a cold the previous week – her first illness – and we had been so worried. However, this had cleared and we had planned a day of Christmas shopping. That morning though she had a strange little cry, more like a whimper, and she didn't feed much in the morning, and she was sleepy. But as she was so young we didn't really have much of a routine and so we weren't too concerned.

“However, when we stopped for lunch she still wouldn't feed, and her nappy was dry. This worried us so we returned home and contacted the doctor, who suggested we used a syringe to feed her, which we did. Again, she took very little. At this stage she had no temperature, but she really just didn't seem okay and she was still very reluctant to feed.

Contacted out of hours GP

“We contacted the out of hours GP who took our ‘gut feeling’ seriously and agreed to see her. Within the half an hour it took for us to get to him, her temperature had shot up and her hands and feet were cold, her skin became blue and blotchy, and her fontanelle was bulging. It was that sudden a change.

“We were sent straight to the Children’s Hospital, where there was a bed already waiting. She was admitted with suspected meningitis and started on IV antibiotics immediately. However, she was too ill to have the lumbar puncture and was too ill to be moved from A&E to a ward.

“We were advised to call her grandparents up to see her, which we did, not even registering what this meant at the time. Eventually she was able to be transferred to a ward, and the lumbar puncture was completed and meningitis was confirmed.

Her cries were constant

“Her cries were constant, she was in distress and yet she couldn't face being held or touched. For 10 nights the doctors wouldn't confirm to us if she would make it through the night and there was so little we could do for her.

“She was in hospital for two weeks, discharged for Christmas Eve, and we spent the entire time at the hospital with her. My mind went from planning her funeral to ordering presents for her first Christmas.

“The hospital was great. She had her first Santa visit and even though she wasn't aware of it, it meant something to us.

“As soon as they knew she would be discharged we were referred to Meningitis Now and the support worker came to our house on Christmas Eve. I remember arriving home from hospital feeling completely scared and alone and then we got a call asking if she could come out. She arrived and answered questions we didn't even know we had and we have kept links with Meningitis Now ever since.

Meningitis Now supported us as a family

“Sophia is now 6 and a half years old. As a result of meningitis she has global developmental delays, severe learning disability and severe speech delay – she is mostly non-verbal. However, this does not define Sophia – she is so much more than a disability. Sophia cannot be labelled, by the many professionals that have assessed her, and she will not be limited by the challenges she faces.

“She may be small in stature but her personality is giant – she loves Disney, dressing up, messing up, and playing with her brother, cousins and friends. She leaves a little glitter wherever she goes, with an infectious giggle and the ability to seek out mischief. No-one will ever tell her she can't do something – she will find a way.

“Meningitis Now has supported us as a family, through helping us arrange fundraisers, through providing counselling, through its Family Days, and most recently through funding a ‘Talker’ for Sophia through its Rebuilding Futures Fund. This allowed her for the first time ever to make her voice heard to anyone around her and opened up a world of choice, increased her confidence and has allowed her to communicate with her friends independently, and even to order her favourite pizza in a restaurant.

Not alone in facing challenges

“Six years on we are still learning of the devastating impact meningitis had on Sophia’s brain and body, but we know she, and we as a family, are not alone in facing these challenges, and are so grateful for the support available from Meningitis Now, and the continuing research and preventative work they do to limit the impact of this disease.

“During covid restrictions we continued to have remote contact with staff from Meningitis Now and their commitment to continue to support us as a family has been much appreciated. Those check-ins mean a lot in reducing loneliness and anxieties over the impact on Sophia in particular and her educational and therapy needs.”