When my son became ill two weeks into a new term I couldn’t believe it. Six weeks off and not a sniffle! More or less as soon as school started he was down with a stomach bug. I did the usual things to make him feel better, but after 2 days there was no improvement. On the third day when I wiped him I thought I saw blood so I made sure I went to the toilet with him every time he went, and there it was again. I bundled him into the car and took him to my GP who gave him a rectal examination told me he had a “virus” and sent us home. Six hours later the bleeding was worse, my GP wouldn’t see him again so I took a sample of the faeces and blood, and took him to A&E. I was sent home with a flea in my ear for being over-anxious, told to put cream on his bottom as the blood was from over-enthusiastic wiping. The sample was discarded, untested.
Three days later the symptoms had gone so I sent him back to school. Later I found out another couple of children in school had similar symptoms.
The following Monday my Mum called to say that our local news was reporting an outbreak of E-coli. I took him out of school until I had spoken to our local Environmental Health department. They assured me as long as he had been free of symptoms for 48 hours it was OK for him to go back to school. A policy that they later amended.
He was tested for E-coli and we waited.
Two days later, my youngest daughter, who was only 3 weeks past her 3rd birthday, and only two weeks into starting school, (they take them at 3 in some parts of Wales) started showing symptoms. But this time from the beginning it seemed very different. She was having horrendous pain, she had a fever, and after just one day of diarrhoea the bleeding she was experiencing was quite unbelievable. This time my GP was more concerned, as by now the outbreak was all over the media. He sent us to A&E and she was admitted. They started doing tests, and within hours was hooked up to a drip for dehydration, medication for the pain and was having what was to be the first of three blood transfusions.
The next day her condition had worsened, by now she had another line in so her blood could be tested every hour. The next day came and she was worse still. A consultant came to see us and asked if we had heard of HUS, of course we hadn’t, not many people have. He explained it to us, and then told us he’d been trying to find her a place in a Paed. Renal unit, but there wasn’t one in Wales, so he said there was an ambulance on standby to take us to Bristol and an air ambulance ready to take us to Liverpool. The next day a bed became available and she was transferred to Bristol.
At this stage, I still don’t 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 100’s 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. We’d been away from home for over a month during which time we had only spoken to our other two children. I hadn’t even been there for my oldest daughter when she had contracted E-coli too. Luckily my Mum’s 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 don’t 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 aren’t 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 doesn’t 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 wasn’t 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 she’s still with us.
I thought E-coli was just food poisoning.
