Information on children and hepatitis C

Hepatitis C won’t affect your child’s growth or development. Children who become infected at birth or very early in life will have already been living with the virus for a long time before they become adults if they remain untreated. This makes it very important that they are regularly monitored to assess whether they have sustained any liver damage.

Treatment

Currently none of the new direct acting antiviral treatments are available for children. There are trials taking place and this should change over the next couple of years. Consequently children currently only have access to peg-interferon and ribavirin with all of the associated long treatment times and side-effects.

If you want to avoid your child being treated with peg-interferon and ribavirin they will have to wait until they can access adult medication in their teens, or when direct acting antiviral treatments are available for children. If you choose to wait, you need to ensure ongoing monitoring of your child’s liver. People living with hepatitis C from birth can have developed quite severe liver damage by their late teens and in rare cases this can happen during childhood.

If you have concerns about your child accessing hepatitis C treatment please phone our helpline on 0845 223 4424 or 020 7089 6221, it is staffed from 10.30am to 4.30pm Monday to Friday (except Bank Holidays and the Christmas break, when dates and times may vary).

When should you tell your child they have hepatitis C?

There is no easy answer to this question.

  • You might want to protect your child by not telling them.
  • You might worry that they will not understand the level of stigma and will tell inappropriate people.
  • You might worry that you will be unable to reassure your child about living with hepatitis C or the knowledge will unnecessarily affect their wellbeing.

These are all legitimate concerns.

Children are likely to want an explanation about their hospital visits and the tests they might be having. Giving them a little information as they grow up avoids suddenly discovering that they having something very difficult to deal with as they enter their teenage years. The shock of finding out at such a notoriously difficult phase in their lives might not be the best way forward in the long term. Parents of children living with HIV are often advised that their children should know they have HIV and understand the illness before they start secondary school. It might be worth considering telling your child they have hepatitis C as a process rather than a single event.

If you are considering when to tell your child they are living with hepatitis C, we suggest you phone our helpline to discuss this and any other issues.

Education

You don’t have to tell your child’s school that they are living with hepatitis C, there is no legal obligation. If your child requires first aid at school it should be given in line with best practice in terms of infection control, a trained first aider will not be at risk when caring for your child.

If you want to tell the school, your child’s right to privacy is paramount. Common practice with HIV is that only the school’s head teacher and the teacher directly involved in the child’s pastoral care need to know.

Mother to child transmission

The risk of transmission from mother to child is rare and thought to be between 3% and 10%. The risk is higher in women who are co-infected with HIV.

Breast feeding is considered safe since there is no proof that breast feeding can transmit hepatitis C – but it is recommended that if a woman’s nipples are cracked and bleeding that she doesn’t breast feed her baby until the nipples are healed.

If you are pregnant or planning to have a child and are hepatitis C positive, it is important to discuss the transmission risk with your consultant. Some medical providers will advise treatment of the woman’s hepatitis C before having a child.

Sharing toothbrushes and shaving equipment is the only other situation where a child may be exposed to the virus via a parent who is living with hepatitis C.

Hepatitis C should have a minimal effect on you caring for your child, in fact you should feel comfortable and enjoy doing everything a parent wants to do for their child.