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Hepatitis C in Children

Chronic hepatitis C infection in children is rare in the UK. However little we know about hepatitis C in adults, we know even less about hepatitis C in children. The good news is that there is increasing research into this area to understand HCV infection in children.

Information on the disease can be found below.

CLDF has also produced a new series of materials available for young people about hepatitis C, developed by a grant awarded from the Department of Health.

The series, called CFacts includes the following leaflets:

• Hepatitis C in young people – the facts

• Why should I think about hepatitis C?

• How can I find out if I have hepatitis C?

• I’m hepatitis C positive – what is the next step?

• Treatment for hepatitis C in young people

• Living with hepatitis C – some thoughts for young people

• My child has hepatitis C – some thoughts for parents and guardians

• How can I find out if my baby has hepatitis C?

'Fact cards' also accompany the series.

To order materials from the CFacts series, please visit the 'order literature' section of the website or contact the office on 0121 212 3839.

CLDF has also developed two websites to help provide information on hepatitis C to young people:

A My Space page - www.myspace.com/hepcfacts and a micro-site at www.hepcfacts.org.uk

Some general information about hepatitis C can be found below.  You can also download / order a copy of The Health Protection Agency Annual Report 2007, Hepatitis C in England' via the HPA website.

About hepatits C

What children are at risk of hepatitis C infection in the UK?
In children, the risk factors for infection are different to those in adults. Most children were infected during blood or blood product transfusions, which were given prior to testing for hepatitis C in donated blood. Routine testing for hepatitis C in donated blood was introduced in the early 1990's.

Occasionally infected adults can be passed onto children by blood-to-blood contact e.g. by sharing toothbrushes. Fortunately, normal household contact, including kissing and cuddling, carries no risk of transmission. A few infected mothers pass on the virus to their baby at the time of delivery. This occurs in about 6% of infected mothers- i.e. 1 in 20 infected mothers will infect their babies. But the risk of transmission is much higher if the mother is also infected with the HIV virus. A very few children catch HCV in unknown ways.

Is it safe to breast-feed my baby?
Most experts believe breast-feeding to be safe but if the nipple is cracked and bleeding it is probably best to use the other breast until the damaged nipple has recovered.

Is testing and counselling confidential?
Counselling and testing is confidential. It is important to clarify what this actually means to you as a parent making a decision on behalf of their child, before you agree to have your child tested for hepatitis C. Your health care professional should discuss the limits of confidentiality in your consultation. This is especially important if you have strong views regarding your consent or refusal for clinic letters to be sent to other professionals involved in your child's care.

If my baby tests positive for hepatitis C does this meant they definitely have hepatitis C?
Any child (under 18 months old) born to a mother who is infected with hepatitis C may be antibody positive i.e. they will test positive for antibodies against hepatitis C and, to the inexperienced, may appear to be infected. However, the presence of antibodies against Hepatitis C in a young child does not necessarily mean that the child will be infected in the long term. This is because babies are born with maternal antibodies which they gradually lose as their immune system develops over the first 12 to 18 months of life. Hence positive antibody tests in children born to infected mothers are an indication that the mother is infected rather than the child.

To detect infection in young children born to infected mothers, a PCR test should be performed to look for the virus directly. Unfortunately, in  young children this very sensitive test can be unreliable and false results do occur, particularly in young children where the amount of virus may be very low. Most experts agree that to identify young children with Hepatitis C, at least two PCR tests should be performed in the first year and an HCV antibody test should be performed when the child is 18 months old. If all the tests are negative then the child is definitely not infected but if the baby is repeatedly PCR positive with antibodies that persist during the second year of life then the child is infected with Hepatitis C.

What happens if your child has hepatitis C?
For infected children we do not know the natural history of the infection.  A small percentage of infected children may lose the virus in early life but the exact number who will cure themselves is unknown.  It is probable that very few children over the age of 1 will eliminate the virus without treatment.

Current research suggests that the disease is usually very mild in children and only a few will develop problems in childhood. However, for infected children the risk of developing severe liver disease in later life is probably high. Most children and young people feel normal and grow normally but some may feel tired or lacking in energy. Some young people may develop significant psychological effects as a result of their infection and skilled support and counselling may be needed.

It is important that children and young people with hepatitis C are seen regularly by the hospital team so they are monitored, even though they seem perfectly well.  It is also an opportunity for you to discuss any issues you think would help your child or your family.  This is particularly important as your child  grows up and they may need help to understand their disease in an age appropriate way.  The clinical nurse specialists in the unit will be happy to help as will other members of the multi-disciplinary team.

Are there treatments available for children infected with hepatitis C?
We do not yet know enough about the benefits and side effects of anti-viral treatment in children as there have been no large scale clinical trials. Combination therapy with interferon and ribavirin does appear to be helpful. Early results of collaborative UK studies show an encouraging response to treatment, particularly in genotypes 2 and 3 but it is not yet possible to accurately assess response rates which seem likely to be similar to the response rates in adults. In the future, collaborative studies involving treatment with pegylated interferon and ribavirin are planned and will provide important information on the efficacy of this therapy in children. However, discussion continues as to which children should be treated and further evaluation of the risks and benefits of early intervention is vital. It is essential that treatment be evaluated with proper clinical trials.

Are there specialist centres for treating children with hepatitis C?
In the UK, there are three specialist paediatric units caring for children with all liver diseases. They are:

Paediatric Liver Service, King's College Hospital, London
The Liver Unit, Birmingham Children's hospital NHS Trust
Liver and GI Unit, St James's University Hospital, Leeds
Many other units also care for children with viral hepatitis and your GP or paediatrician can refer you to the most appropriate unit.

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