Jemma became poorly during a family holiday in Wales. She was fine on the Tuesday, we went for a long walk and when we got back she said she had a bit of back ache and went to bed. I thought nothing of it knowing she was on her period and this happened. Jemma got up early evening and came down to tell me she had been sick, she carried on being sick through the night and remained in bed the following day. The following evening, she started with diarrhea, but it wasn’t the normal diarrhea she literally couldn’t get to the bathroom. We also noticed a rash on her tummy which we thought was the usual viral rash that Jemma got when she was poorly.
The following day, Thursday, I contacted a local doctor and explained her symptoms over the phone, he said it sounded like NOROVIRUS and advised us to go home as it was likely we would all get it, that’s what we did. At the time I was aware that NOROVIRUS was rife and they had closed wards at our local hospital. When we arrived home Jemma appeared to come round a bit and was able to go upstairs to bed. She came down a while later asking if she could sleep on the air bed in the living room, her dad slept on the couch.
On Friday morning her dad got up to go to work and Jemma went to the toilet, this was about 7:30/8am. She shouted me around 9 asking for calpol as she had headache and her back and shoulders where hurting, I put this down to her sleeping on the air bed. By 10:30 she seemed to deteriorate, she became extremely lethargic, although she knew where she was and who I was. The rash seemed to get worse and even though it disappeared when I did the glass test I rang the doctor as I knew something wasn’t right. I thought she was dehydrated.
The doctor came out and looked at the rash agreeing it disappeared when pressure was applied, she took Jemma’s blood pressure but was unable to get a reading, she tried a few times and said she though Jemma needed to be taken to hospital, I could tell she concerned. The first response arrived and they couldn’t get a reading either, the ambulance arrived and the next thing I knew we were being rushed to A&E.
They tried to get a line in but struggled. There were lots of doctors and nurses in the room, I remember counting 14 at one point, realising then just how serious she was. My husband arrived and we were taken into a private room and told they suspected toxic shock, I immediately said she was on her period and using tampons. They told us they needed to incubate her and transfer her to Manchester Children’s Hospital as they didn’t have the facilities at Wigan. When the NWTS team arrived the doctor in charge checked her pupils and found them to be unresponsive, she was taken for a CT scan. We were told the results were inconclusive, the scan showed something, but it could have been there since birth or caused some kind of trauma at some point, they weren’t sure. They said once she became stable they would do an MRI scan to get more information. She was taken to Manchester. That was in the evening of the Friday.
The following day is very blurry, we were told Jemma’s condition was life threatening. We were told they had grown the staphylococcus bacteria from her bloods and where treating her with a broad range of antibiotics. It was very frightening. A doctor took us into a room and told us that Jemma’s lactate levels where very high, causing her heart and lungs to work far too hard. He told us if they couldn’t bring them down then the next conversation would be a very different one. We had that next conversation, he told us to bring in family to say goodbye. We did.
The doctor then told us about something called ECMO that could take over the function of her heart and lungs, like bypass. He explained there where only a few hospitals in the UK with the facility and talked about an air ambulance being a possibility to Leicester. He then told us that Alder Hay had the facility.
Jemma was taken by the NWTS to Alder Hey and was successfully put on ECMO, straightaway her colour improved.
The consultant at Alder Hey explained that Jemma’s blood had to be thinned to enable the ECMO to work and this could cause internal bleeding or a bleed to her brain. Jemma was also put on kidney dialysis. Over the next few days’ things stayed the same, she was critical but comfortable. She then slowly began to fight the infection and things started to look positive. We were told on the Thursday they were going to bring her off the paralysis drugs as they needed to see her move before slowly brining her off ECMO. We went to bed that evening feeling really positive, I even joked with the nurses that if she suddenly sat up they had to ring me.
On the Friday morning Tony went over to PICU, he contacted me and said I needed to get there straight away it wasn’t good. Jemma had had a massive bleed to her brain around 7am that morning. They took her off ECMO and into surgery to try and drain the bleed, we were told it was unsuccessful and there was nothing more they could do, she was, they thought, brain dead. They couldn’t carry out tests for a further 24 hours until all of the medication was out of her system. The tests proved our daughter had gone.
Jemma’s was and always will be a massive part of our lives. We are determined that her memory will live on. She loved anything musical and played flute for Wigan Music Services, she also loved swimming and swam competitively for Hindley Swimming Club. Her passion was helping others, especially younger children, she helped to teach swimming at club and also helped me with my Childminding job.
Since she fell asleep her family and friends have raised over £40K for Alder Hey Children’s Hospital and Ronald McDonald House, both of whose did everything they possibly could to save Jemma and support us as a family.
Our mission now is to raise as much awareness as possible about the signs and symptoms of toxic shock syndrome and Sepsis.