Meningitis in your words

Jasmina Lily Dzafic's story

  • Location: England
  • Categories: Meningococcal
  • Age: Toddler 1-3
  • Relationship: Parent
  • Outcome: Bereavement
Jasmina Lily Dzafic

Meningitis and meningococcal septicaemia was something you read about in the media, it was not something that happens to anyone you knew and it certainly was not something that would happen to us. Then on 27th February 2008, it became our reality.

Two weeks after her second birthday, our little girl Jasmina was full of beans. She had been running around, lively, energetic, waving her red balloon. She fell asleep in the car on the way back from lunch, and when she woke up, she had a slight temperature and was a bit clingy. You look back and you think you should have known, but she had had the usual toddler bugs, picked up from her little friends. This was nothing we had not seen before. Having given her some Calpol, we curled up on the sofa and watched Dora the Explorer together. She was sick in the early evening, but we thought this was part and parcel of a toddler bug. 

"I immediately knew what it was; the bruises were like nothing I had seen on her before."

We put her to bed at her usual time but she would not settle. We gave her a cool bath about 10pm to try and bring her temperature down. She seemed to settle after that for a bit but woke within an hour and was sick and had diarrhoea. When we went to change her, there were small bruise-like marks under her nappy which had appeared since her bath. I immediately knew what it was; the bruises were like nothing I had seen on her before. We rushed her to A&E. She was still alert, asking for a drink and asking to get into mummy's bed and do some Playdoh. She was changing before our eyes. The purple was spreading over her. It came on her face; she looked like she had black eyes and bite marks on her chin. She was restless and cold to the touch. 

Then someone mentioned she would have to be moved to an intensive care unit in London. They took her down to theatre to put tubes in her. On the way to theatre she went to sleep, the proper term is probably that she fell unconscious but I prefer to think of it that she fell asleep. We never saw her awake again. Then the transfer team arrived to take her to the Evelina Children's Hospital in London. I think it was about 6am by this time. A doctor said for the first time that she might not survive the transfer and might cardiac arrest at any time. By this point she was purple from head to foot, she looked like a burns victim, tubes cut into her little neck and arms, with her bunny beside her. 

By the time we arrived in London she was surrounded by equipment; my husband was just sitting there watching, unable to comprehend how the little girl he had been chasing round the lounge a few hours before was lying there like this. A doctor started talking about her losing limbs. I had prepared myself for this, thinking, she could cope without a hand or leg. Little did I know that we would then be taken into a private room, and with our family around us, we were told that her condition was so serious, that even if she survived, she would lose all four limbs at the shoulder and hip. No words can describe how that feels. They would see, if she survived until morning, essentially what parts of her body she would be left with. 

"Less than 36 hours after she had first had the temperature, it was clear that her little body was basically destroyed."

The medical staff were amazing. It was like a rollercoaster that you did not know where it would take you next. Less than 36 hours after she had first had the temperature, it was clear that her little body was basically destroyed. Someone explained that the colour she was on the outside - this black, burnt-like appearance - was likely to be the colour of all her internal organs, her eyes, her brain, every inch of our beautiful daughter. We were moved into a private room and surrounded by our family, she was lifted off the bed and laid in our arms, where her little heart stopped beating.

Once they had taken her tubes out, we washed and dressed her and had some time on our own. And then we left her, lying on the bed with her bunny and came home alone. Coming into the house, to her little clothes still drying on the airer, her second birthday balloons still in the lounge, it is impossible to describe the way that feels. She was our only child and the house has lacked life from the moment we left for A&E that night back in February. 

It was one of the ICU nurses who mentioned the Foundation. Fund-raising has given us and those around us something to focus on and a way to find something positive to come out of this. Time is not a healer; we are just trying to learn to live with the grief and re-build our lives around it.

Our beautiful butterfly, Jasmina Lily, will always be a part of our lives.

Jenny Dzafic
March 2009