Haemolytic Uraemic Syndrome

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).

Haemolytic

This refers to the abnormal breakdown of red blood cells. Your child may appear very pale because the red blood cells are destroyed and this will cause anaemia. Blood transfusions may be required.

The number of platelets (cells that help the blood to clot) are also reduced during the illness. This may result in easy bruising.

Uraemic

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.

Treatment

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.

• Most children with HUS will need blood transfusions to treat the anaemia. The low platelet numbers do not usually need treating.
• Because the kidneys are not able to get rid of potassium and phosphate, the dietician will give you advice about foods containing a lot of potassium and phosphate. Your child will need to avoid these foods while the kidneys are not working properly. The dietician may also prescribe a high calorie drink or feed for your child. Sometimes, if a child has a very poor appetite during the illness, a small tube (called a nasogastric tube) is placed into the stomach through the nose. The high calorie feed can then be put through this.
• The kidneys also get rid of extra water. Whilst they are not working well, the amount of fluid your child is allowed to drink may be limited.
• Dialysis will be needed if levels of waste products in the blood get too high, or if the kidneys cannot get rid of enough water. Dialysis is usually carried out by placing a soft plastic tube in the tummy whilst your child is sedated. Fluid is then run in and out, using a dialysis machine. This is called peritoneal dialysis. Sometimes an alternative form of dialysis (haemodialysis) is used. This involves placing a plastic tube into a large blood vessel and using a different type of dialysis machine to clean the blood. This will be explained in more detail if your child needs dialysis.
• Unfortunately, the only way to tell how well the kidneys are working and what dialysis is needed is by Blood tests. Usually these are needed once or twice a day at the beginning of the illness in order to keep an eye on your child’s condition and decide what treatment is needed. If your child does require a GA we will usually place a tube into one of the large veins in the neck to help us take blood samples and give fluids.

Outbreaks

Very occasionally other children in the same area or playgroup are affected and we will inform your general practitioner of your child’s illness. Public Health doctors may contact you also. 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 food, please inform the doctor on the ward for advice.

Long Term

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 outpatient visits to your hospital unit or clinic. At these visits, your child will have their blood pressure measured and a sample of urine checked to see if extra protein is leaking out. After one year, and possibly 5 years, a specialised kidney blood test called a GFR will be carried out to measure exactly how well the kidneys are working. The visit normally takes a whole day but you will not need to stay overnight.

Information

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 17 May 2011.

Content compiled by members of the Children’s Renal & Urology Unit, QMC Campus, Nottingham University Hospitals.

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.

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