Jenna's Story - by Jo and Phil, Surrey
2nd March 2011
6th - 8th July: On the 6th July 2005 our daughter, Jenna, who was sixteen months old, began to show signs of having an upset stomach. As children often get upset stomachs at that age my husband, Phil, and I did not think too much about it, assuming that she had probably eaten something that did not agree with her. When the diarrhoea became worse we realised it must be a bug of some kind rather than a food reaction. Then when we noticed small streaks of blood in Jennas nappies we started to be concerned. I took her to our GP who advised me that she had probably caused some damage down below due to the frequency of the diarrhoea and not to worry.
9th July: By the next morning there was so much blood in Jennas nappies that we decided to get a second opinion, so I took her to the accident and emergency department at St Peters hospital in Chertsey. They took a stool sample, did a few other diagnostic tests and suggested that she might have dysentery. The doctors said her symptoms should improve by themselves after a few days and to keep her drinking lots of water to keep her hydrated. However, at around 8pm that evening, we received a phone call from the hospital asking if Jenna could come back in for a couple more tests. As Jennas big sister, Lucy, who was three and a half years old, was already asleep in bed, we decided that Phil should stay at home with her whilst I took Jenna back to the hospital. When I got there I was told that one of the test results from earlier that day was showing some strange signs and they wanted to examine it further. After an hour or so I was told Jenna had contracted the infectious bacterium called E.coli O157. We were put in an isolated side room and told that Jenna would have to stay overnight for further monitoring. Later that evening a consultant came to see me and explained more about Jennas condition. It was only when she took my hands in hers and asked me if I was OK that it sunk in how gravely ill our little girl was. The consultant explained that the E.coli had caused Jenna to develop a condition called HUS (haemolytic uraemic syndrome) This syndrome is caused when the toxin produced from the E.coli bacterium attacks the bodys red blood cells. These damaged cells then clog the tiny blood vessels in the kidneys, preventing them from functioning, causing acute renal failure.
10th July: The following day, while Lucy stayed at home with her Grandmother, Phil joined me at the hospital, bringing with him pages of information about HUS that he had printed from the internet. We spent the day frantically trying to read and learn as much as we could about HUS so that we could get a better idea of what was going on. Jenna was by now very floppy and sleepy, showing obvious signs of deterioration. We were told that she needed to be transferred to Guys Hospital in London where they had a specialist renal unit with more experience of her condition. Realising we were not going to be back home for a while we made arrangements for Lucy to go and stay with her two Grandmothers, who would share her care. Sadly, as Lucy had been asleep when Jenna and I were called back to the hospital, we did not even have a chance to say goodbye to each other, and at this stage we had no idea how long we would be gone for.
11th July: As Jennas condition was deteriorating rapidly, we were transferred to Guys hospital by ambulance the following morning. As we drove through London with the sirens blaring it was all strangely surreal, but reassuring to feel that we would soon be surrounded by experts who would be able to give Jenna the help she needed. When we arrived the doctors explained that there is no specific treatment available to cure HUS and that all they would be able to do was help support her body in the hope that the kidneys would improve by themselves with time. This news came as a real shock. We were both hoping that a large dose of antibiotics or something similar would do the trick. To hear that there was nothing that the doctors could give Jenna to help her fight the infection was very hard. A feeding tube was inserted into Jennas stomach via her nose and we were told to restrict her fluid intake to a measly 2ml at a time. Phil and I slept (or rather spent a long night awake) in a bed next to her little cot bed.
12th July: The next morning the doctors told us that Jenna would need peritoneal dialysis which could temporarily do the work of her kidneys. For this to happen she needed an operation to insert a peritonealdialysis catheter into her abdomen. We went down to the operating theatre with Jenna and after watching our little girl fall asleep under the anaesthetic, Phil and I both burst into tears. For a couple of hours we did not have to be strong for Jennas sake and allowed ourselves to let go of some built up emotion. Everything had happened so fast and for the first time we could take a step back and take in what was going on.
13th July 17th July: For the next few days, as well as having dialysis, Jenna was administered multiple blood transfusions and plasma. She was understandably distressed at having the feeding tube in her nose and kept pulling it out and then having to have it reinserted which was clearly unpleasant. Phil and I spent our days quizzing the doctors and nurses for information on Jennas condition and our nights trying to sleep next to her bed in the hospital. We were fast becoming more knowledgeable about HUS and meticulously analysed each of her test results in an increasingly expert fashion. A public health enquiry was started to try to find out where Jenna had caught the E.coli from in the first place, but unfortunately this drew a complete blank. Most people seem to contract this form of E.coli when visiting infected farms or eating food that has not been cooked properly, such as BBQ meat, but we had not done either of these. We wracked our brains to try and work out how Jenna may have been infected, but to no avail.
18th July - 20th July: Now that Jenna was undergoing dialysis, we were expecting to see an improvement in her condition. Unfortunately, her kidney function was still getting worse rather than better. The doctors increased the blood tests to twice daily so they could keep a close eye on the situation. Her creatinine peaked at 509 (normal range is 10-50) and her urea level was 26.6 (normal range is 2-7). We were very anxious at this stage and knew that all we could do was hope and pray that Jenna would be strong enough to fight this devastating illness. To make matters worse my own stomach had been feeling a bit strange for a few days and I had naturally put it down to worry. However, when I started to pass blood, just as Jenna had done, I realised that I had also contracted E.coli O157, presumably from changing Jennas nappies. When tests confirmed this, I was then given the devastating news that I would not be able to stay at the hospital in case I passed on the infection to anyone else. I had to leave Jenna at this critical time and went to my mothers house to be looked after. Fortunately, as I was older than Jenna I was told it was unlikely that I would develop HUS and that my body would probably fight the E.coli by itself. The rest of the family then needed to be tested in case they were also carrying the infection, but luckily everyone else was fine. During this time Phil kept a vigil at the hospital, day and night, only leaving Jennas bedside to grab a bite to eat or make an occasional quick phone call.
21st July 24th July: Once I had recovered from the worst of the infection I was allowed back into the hospital and was absolutely delighted to find that Jennas results had begun to improve. By now she could sit up and, incredibly, she was smiling at everyone. It really was a wonderful sight to see. Doctors, nurses and other visitors couldnt help but smile back when they saw our little girl grinning happily at them as they walked past her. During the days that followed, Jenna would play with toys in her bed and enjoyed being pushed up and down the ward in a toy peddle car when she was temporarily off dialysis. She continued to have blood test after blood test in what, with a streak of black humour, we nicknamed the torture room as you could hear the children screaming and crying from inside. By this time she had had over fifty blood samples taken. Her arms, hands and feet were a mass of marks where the needles had been. Amazingly, Jenna did get used to this daily ritual.
Phil and I were now given temporary accommodation close to the hospital. This was fantastic as it meant that we could get some proper sleep for the first time in over two weeks, but it did still break our hearts when we had to leave Jenna in the hospital every evening. When Jenna was well enough for visitors, Lucy came to visit with her Grandmother. It was lovely to have the whole family together again after so long, and to hear the two girls chattering away to each other. We were even allowed to take Jenna out of the hospital in between dialysis sessions one day and took her to the nearby London Aquarium to see the fish.
25th July 27th July: The doctors had explained to us that the first sign of improvement would be if Jenna started to urinate again. Every so often we would check her nappy to see if it was wet, only to be disappointed as there was nothing there. Then, after 12 days of dialysis, we discovered that her nappy was wet and she had finally done what we had hoped. Never before have two parents been so happy to change a nappy! Jennas kidney function rapidly improved after this and soon she was able to come off the dialysis for good. She was taken back to the operating theatre to have the perennial dialysis catheter removed (another very emotional time). By now Jenna had begun to eat small amounts of food again so the feeding tube was also removed. This was a great couple of days. We knew that Jenna still had a long road to recovery ahead of her, but she was through the worst.
28th July: When Jennas creatinine level was safely back down to 44 and her urea level was down to 7.3 she was discharged from Guys hospital and her follow up care transferred back to her local hospital, St Peters, where she has been regularly monitored ever since. Five years on, Jennas kidney function has improved considerably and we are pleased to say she is now a fit and healthy girl approaching her 7th Birthday. She will continue to be monitored by a renal consultant for at least the next ten years but the signs are encouraging that her kidneys have not suffered any significant permanent damage.
Phil and I would like to take this opportunity to thank a few people who helped us through this difficult time. We would like to thank St Peters Hospital for their fast diagnosis of Jennas condition, for initiating a quick transfer to Guys Hospital, and for all the after care that they have given Jenna in the last five years. We would like to thank the doctors and nurses at Guys Hospital for the brilliant specialist treatment that they gave Jenna when she needed dialysis and for all the fantastic care they gave Jenna when she was at the most critical stage of her illness. We would like to thank the Ronald McDonald parents home for giving us a place to stay so that we could be near Jenna while she was in Guys Hospital. We would like to thank HUSH for providing us with information regarding E.coli and HUS and giving us a link to other families with similar experiences. We would like to thank our family and friends for being so supportive and for all their kind thoughts and prayers. Thank you also to Lucy who, at the age of three and a half, coped surprisingly well with her parents sudden disappearance and behaved brilliantly for her Grandmothers. Finally we would like to thank Jenna for being amazingly strong throughout and for continuing to smile in that wonderful way of hers even through the tough times.
Note: Jenna is going to do a 24 hour sponsored silence to raise funds for HUSH. You can donate securely online via her fundraising website at the related address.
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