Early morning on the 29th July 1991 our life was turned upside down when we lost our 6 month old daughter Stacey to meningitis.
Previous day we were preparing to go to a birthday party for our nephew. Stacey had slept right trough the night but woke not her usual happy self. Symptoms, felt warm to touch and continual crying. It was a Sunday so we got in touch with an on call out of hours duty GP around noon that day. He checked her over, althouh her temp registered over 100f he was satisfied that this was a virus and we should treat with calpol and plenty of liquids. Over the course of that afternoon she mainly slept but at around 4pm my wife went to change her and noticed a small bruise like mark round the top of her leg. We rang the GP again and mentioned this rash, he immediately said he was coming out to see her and on observation rushed her to our local A&E. She was given a dose of penicillin straight away but you could noticeably see the rapid deterioration, spread of this purple rash taking hold of her body and her body swelling in size.
She was taken to the childrens ward and we were told she was seriously ill and the next few hours would be critical. They said she might have to have limbs amputatd and she may have some brain damage due to the extreme seriousness of her condition.
Stacey hadn't been christened but we managed to get hold of our local vicar who came to the hospital and performed a small blessing.
Unfortunately at around 1am her heart stopped and we were asked to leave while they tried to restart wih cpr. They came to the waiting room not long after to tell us that there was nothing else they could do and that she had passed. I was able to hold her afterwards, her body twice the size, still warm from the high temperature and her body covered in that terrible rash, something i still remember to this day.
Meningococcal Septicemia was on her death certificate. A funeral, small white coffin and small congregation. Then it was our healing process, questions, not a lot of answers, and realisation that this is rare and due to the severity and rapid deterioration of her condition not a lot we could have done differently. The GP, Paediatrician and nurses all said this was their first encounter, we live in a small town in Yorkshire.
We joined as members, and raised some money over the next two years in her memory for MRF. I was asked to talk at our local comprehensive school about our experience and to raise awareness of this condition in young children and teenagers. It helped us get through a very difficult time along with great support from our immeadiate family and close friends.
Exactly 15 years later, to the day, Stacey's mum died from complications with her condition of Lupus, on the 29th July 2005. I had to take comfort that they were together again and i have only have to grieve one day a year and celebrate their lives with my other son on that date.
We were young parents and at that time awareness and certain symptoms were not known or rare. Stacey couldn't communicate her symptoms, things like cold hands and feet as well as others in babies are essential to promote and is a big part of what MRF are doing round the world.
Although my story didn't end well better awareness and advances in science have given future patients a fighting chance. I take great comfort in seeing patients surviving this condition, hopefully one day it will be eradicated.
A very traumatic and upsetting experience for a family to go through. Our experience was over 32 years ago ad obviously things have improved with awareness an vaccines over that time. Support for parents and families has improved also.