Haemolytic Uraemic Syndrome (HUS) is a rare condition, which affects people of all ages, but usually affects babies and young children. There are different kinds of HUS, but the most common happens following diarrhoea caused by a bacterium (bug) called E. Coli. This bug releases a harmful substance called verotoxin into the bloodstream. Verotoxin causes the collection of problems (syndrome) that is called haemolytic uraemic syndrome (HUS for short).
This refers to the abnormal breakdown of red blood cells. Your child may appear very pale because the red blood cells are being broken down and this will cause anaemia. Blood transfusions may be required.
The number of cells that help the blood to clot (platelets) are also reduced during the illness. This may result in easy bruising.
The verotoxin also attacks the kidneys, stopping them from being able to do their normal job of getting rid of waste products and fluid. One of these waste products is called urea and the word “uraemic” means too much urea in the blood. If urea and other waste products build up in the bloodstream because the kidneys are unable to get rid of them, your child may feel listless, sleepy and sick. Other waste products include potassium and phosphate. The kidneys also get rid of extra water in the urine. If they are not working properly, the amount of urine produced is much less and your child may start to look a bit puffy, often in the face and legs. When the kidneys are unable to get rid of enough waste products and water, this is called kidney failure.
It is difficult to predict at the beginning exactly how your child will progress. In some children HUS is mild and in some it is severe. If it is severe and your child is not passing urine then dialysis may be required (see below). You should expect to be in hospital for two to three weeks if dialysis is needed but some children will get better more quickly and some will take longer. The doctors and nursing staff will keep you informed about your child’s progress day by day. You should feel free to ask questions at any time.
Very occasionally other children in the same area or playgroup are affected and your general practitioner will be informed of your child’s illness. If other children in the family, or others with whom your child has been playing, become unwell then they should be seen by a doctor, or the hospital staff informed.
The disease may be spread by food, so if your job involves preparation or serving of food, please inform the doctor on the ward for advice.
Most children seem to recover completely from HUS. However, HUS has only been recognised for the past thirty years or so and it is not know exactly how well the kidneys will be working in forty to fifty years time. Until there is a clearer picture, monitoring of all children who have had HUS will continue, even if dialysis was not required. The majority of children do very well and it can be confirmed that the kidneys are continuing to work normally. In a few cases, however, the kidney function gets worse over time and treatment or more frequent follow up may be needed.
The normal follow up will involve a visit to the ward at one year after the illness and then once every five years. At these visits, your child will have their blood pressure measured and a sample of urine checked to see if extra protein is leaking our. They will also do a set of specialised kidney blood tests called a GFR to measure exactly how well the kidneys are working. The visit normally takes a whole day, but you will not need to stay overnight.
We appreciate that you will be upset and may be confused by your child’s sudden illness. This information is just intended to give you some simple facts about HUS. During your stay in hospital you may be visited by a social worker who will offer you support and advice. The doctors and nurses will aim to keep you well informed about your child’s condition and you should feel free to ask any questions that may arise during the course of your child’s illness or if you require more information.
NKF Controlled Document No. 276, Haemolytic Uraemic Syndrome, written 4 February 2008. Last reviewed 29 January 2008.
Content compiled by members of the Children and Young People's Kidney Unit, City Hospital, Nottingham NG5 1PB.
The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.
Page created: 4 February 2008
Last updated: 4 February 2008
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