Testimonies

At this stage, I still dont think we realised how serious her condition was. Within hours of arriving, we were told that her kidneys had completely shut down. In the middle of the night she was taken to theatre catheters and drains were put in and she was put on 24 hour Peritoneal Dialysis. We watched in terror as she stayed like that for 10 days, and then slowly she started getting better and they started reducing the time she was on it, until after another 9 days of PD, 2 more blood transfusions and 100s of blood tests, they took her back to theatre and removed the tubes. Her diarrhoea had long stopped but even at this stage she was still leaving bloodstains in the nappies we had had to put her back in.

After another week in Bristol and a wound infection to top everything off she was allowed home. Wed been away from home for over a month during which time we had only spoken to our other two children. I hadnt even been there for my oldest daughter when she had contracted E-coli too. Luckily my Mums employer had given her compassionate leave to look after them for us, something which I can never thank them enough for.

Environmental Health were still testing the other two children every 48 hours until they had 2 negative samples. My oldest daughter was clear after 5 weeks, and went back to school. My son on the other hand kept having one negative test, and the next would come back positive. This happened 3 times until after 13 weeks he was allowed to go back to school. It was 5 months before my youngest daughter could return.

Eighteen months on and only now are things starting to resemble normal. People dont ask how the children are any more because they think it ended for us the day my daughter was discharged. She had daily visits to our local hospital for 2 weeks after as her Haemoglobin was still so low and still has check ups every 2 months now. It took us months to get her back out of nappies, as she was so afraid, in fact she still has toileting problems now and is permanently on Lactulose. The levels of protein and creatinine in her urine still arent back to normal and it still shows a trace of blood, however the blood pressure problems she originally suffered seem to have subsided and she doesnt need any medication for it. For months after she would cry in her sleep and only when you woke her and she realised she was home she would calm down. Her kidney function is about 80% of what it should be.

The emotional toll it took on us all was incredible. For months after the children were really clingy, and I was short tempered with everyone although my poor husband bore the brunt of it!! Even now it upsets me to think about what we all went through, to see my baby screaming and delirious with pain, then unable to wake up. Crying because we had to deny her a drink during treatment and then when she could drink because she wanted more and wasnt allowed it. Lashing out at us because she was in so much pain and we wanted to cuddle her to make her better but it hurt her more.

It was a time none of us will ever forget. We have a reminder every night when we get her ready for bed in the form of her scars and a post-op hernia, but at least she made it. Things could have been a lot worse; at least shes still with us.

I thought E-coli was just food poisoning.