Testimonies

I will never forget the day we got the phone call from nursery. Our two and a half year old daughter, Maisie, had had a sudden and severe bout of extremely nasty diarrhoea and nursery policy required parents to be contacted immediately and their children collected and taken home until the symptoms had been clear for at least 48 hours. This was not unusual, as all the children in her group were toilet training and the transmission of various bugs was almost inevitable. It seemed like nothing more than a minor inconvenience for us having to take time off work (we are both secondary school teachers ) and a bit of discomfort for her, but hey, a few days off looking after our daughter was something we had had to do previously on a number of occasions, such are the joys of being parents.

But things did not improve. She got steadily worse, her runs became increasingly more frequent and she was off her food in a big way. Time to get her to the doctors we thought, and the GP suggested viral gastroenteritis.keep her off nursery, plenty of fluids and keep our eye on her. Later that week, still no improvement. She was feverish, very irritable, wanting lots of hugs and more worryingly, her runs were now containing blood. Back to out of hours GP, where we were again told not to worry, that the blood was from a small tear in her anus and that it was probably a particularly nasty virus. Things got worse. It is no exaggeration to say she started to turn green and we actually took her to A&E where they agreed it looked serious and kept her in overnight on a drip. Her nappies consisted of nothing but green slime and blood that she was filling every 15 minutes, her little face contorting in pain as she tried to go to the toilet. The sample they took to the lab had no poo in it all, yet they knew better and when the sample came back, it was no surprise it was given the all clear, because there was no stool to test. They sent us home, despite the fact that our daughter was clearly desperately poorly.

The rest of the week passed and there was no change. More bloody nappies, no appetite, fever and stomach pains. It was utterly heartbreaking to see our little girl so ill and not be able to do a damn thing about it. Then something happened, that to this day we will thank our lucky stars forwe had a visit from the Food Health and Safety Agency because another child at nursery had also been off ill and was showing signs of E.coli. The FHSA had followed up with the nursery and they passed on our details. They came on the Friday afternoon, and asked us a series of questions about where we had been and what we had eaten over the previous fortnight or so. As a parting shot, one of the officers happened to mention that we should keep an eye out for her not weeing, as this was a sign of complications of E.coli. At this point we had still not heard of HUS. The weekend passed and it suddenly dawned on us that because she was back in nappies due to the horrendous runs, we had barely bothered to check for urine, but we realised she hadnt had a wee for a while. This was the Sunday morning and we drove her again to an out of hours GP. We almost had to kick the door down to get them to see us and insist that they phone through to the childrens ward at the hospital so she could have her blood tested. By Sunday afternoon we had the results of the test and our world fell apart. The levels of urea, creatinine and other toxins were so high it was a miracle she wasnt already dead. The consultant explained that she had HUS at this point still no confirmation of E.coli and she was blue lighted in an ambulance to Alder Hey. By Sunday night she was in theatre having peritoneal catheters inserted into her stomach so dialysis could begin. We dont expect her to die, but were the first words the consultant nephrologist spoke and those words still haunt me a year later.

She was in theatre for an hour then took a few hours to come round and it just killed us to see our daughter in a hospital bed with a big tube sticking out of her stomach.

Over the next 3 weeks, she had umpteen blood tests and her veins were battered by the time she got out. She needed two blood transfusions because her haemoglobin dropped so low. She had to endure a renal diet. She needed emergency surgery to stitch up her stomach after the tube came out dragging some stomach lining with it. It was just utterly unbearable. However, having been frustrated and fobbed off by GPs and clinic nurses, the care she (and we) received at Alder Hey was simply outstanding. Through those weeks of pain, suffering and uncertainty, the consultants, doctors, nurses, dieticians, cleaners and caterers were just fabulous.

Blood test after blood test showed small but steady signs of improvement as her little kidneys were allowed to recover. The numbers dropped and eventually came the news that we could continue to medicate her at home. Armed with a small suitcase of various medicines mainly to regulate and control her blood pressure we took our daughter home. At first she was in and out of hospital 3 times a week, then once a week, then once a month, and now twice a year. She needs to go into Alder Hey for the GFR test in September 2009 just as she starts school! But to think back to how ill she was, and how close we came to losing her, and how fortuitous it was that the Health people came on the Friday and not the following Monday.it just makes us so grateful that she has made such a good recovery, even though we know she will be monitored for 5 years. And words cannot describe how thankful we are for the expert care she received in Liverpool.

As it happens, we got a phone call from a top vet months later asking if we minded our daughter being used as an example in a veterinary journal. Why? Because it turned out that the original source of the E.coli was from a pet dog that belonged to a family member of one of Maisies nursery friends and this was the first known documented case of E.coli O157 being transferred from dog to human. Vets were therefore being made aware that dogs brought in with the runs should be treated with a little more caution.

HUS

- three letters that make my blood run cold, and every time I look at my daughters face, I find it hard to forget that awful green pallor she had when her kidneys were failing, no-one knew and only at the last minute was it spotted.