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Telling a Child He or She Is Infected with Hepatitis C

Nicole Cutler L.Ac. July 22, 2014

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When a son or daughter has Hepatitis C, telling them about it is hard. These pointers can help guide parents or guardians towards having “tough” disclosure conversations in a way that benefits the child most.
telling your child they have hepatitis c

Parenting is far from easy, a realization that crystallizes the day our children are born. When a child has Hepatitis C, the challenges seem to mount even more rapidly. Deciding when and how to explain to your child that they have this viral infection of the liver requires strength, compassion and a solidly constructed plan.

Known as vertical transmission, most children are infected with Hepatitis C at birth. A mother with Hepatitis C has a 1 in 20 chance of passing the infection on to her child. The higher the mother’s viral load, the greater likelihood of vertical transmission occurring. According to the American Liver Foundation, Hepatitis C infects about .15 percent of 6-11 year olds and .4 percent of 12-19 year olds. Approximately 23,000 to 46,000 children in the U.S. currently have Hepatitis C.

Be Honest, Open and Thoughtful

Experts advise parents to discuss the child’s Hepatitis C infection as soon as they are capable of understanding – at 8 years old or younger. According to guidelines set forth by the Hepatitis C Support Project, the two cardinal rules of explaining to your child they have Hepatitis C are:

  1. Be Honest – Although the child’s maturity level and readiness to receive information must be factored in, never lie to a child. Lying will destroy trust, a connection that is crucial for allaying fear.
  2. Share as Soon as Possible – The longer you wait to tell a child about their illness, the greater the chance of destroying trust. According to Mary Tasker, author of How Can I Tell You which explores HIV and disclosure, “Secrecy creates a lot of lies and mistrust within a household. That kind of mistrust leaves it up to the child’s imagination, which can be more fearful.”

According to Lori W. Weiner, coordinator for the Pediatric HIV Psycho-Social Support and Research Program at the National Institutes of Health, trust between parent and child is paramount during disclosure. Disclosure should occur little by little, beginning when the child can communicate.

In general, most experts suggest parents slowly disclosing elements of their Hepatitis C status based upon what their maturity level affords. For example, young children (under age 8) might be ready to hear:

  • Everyone is different and you have something unique in your blood that the doctors need to check on every six months.
  • Your blood is a private body part that you only talk about with your family and doctor.
  • There is a germ in your body that needs to be checked up on and treated with this medicine.

Therapists often suggest waiting on more technical information, such as the name of the virus, until the child asks specific questions or is old enough to understand.

Questions That Children Might Ask You

Eventually, children are going to have questions about their illness. Natural questions are bound to arise such as:

  • Am I going to die?
  • How did I get Hepatitis C?
  • Who can I talk to about this?
  • Can I infect other people?
  • Why am I the only one who has this?

Counselors emphasize the importance of parents having a general plan regarding how to address these questions. While honestly answering these questions will increase a child’s comprehension of their disease, it will not necessarily put their fears to rest. However, being able to discuss their fears is healthier than keeping them bottled up so they can expand.

Additional Issues to Prepare For

  • How to teach your child to be aware of the contamination potential of blood; for example, blood contains germs, and only a doctor, parent or teacher can touch theirs.
  • Be cautious of whom to discuss their infection with, because not everyone is educated about this type of condition.
  • How and when to tell siblings about their infection – to prevent secrets from hanging around the house.
  • How to stay healthy – from getting blood tests or biopsies, to taking medication, to eating well, and exercising for optimal liver health.

The conversations parents have with infected kids about Hepatitis C will shape the child’s perception about this liver virus. Being honest, open and thoughtful will help educate your child, protect them and give them the tools they need to live long and healthfully., How To Tell Children They Have Hepatitis C, Christine M. Kukka, Retrieved June 22, 2014, Hepatitis C Support Project, 2014., Hepatitis C factsheets – Pregnancy Babies and Children, Retrieved June 22, 2014, Hepatitis NSW, 2014., Hepatitis C in Children, Michael R. Narkewitz, MD, Retrieved June 22, 2014, American Liver Foundation, 2014., Talking to Children, Retrieved June 22, 2014, Parents of Kids with Infectious Diseases, 2014.

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  • Cosmic

    thank you for this opening post. When I was diagnosed in 2000 nobody knew anything about hepatitis C and having hepatitis b antibodies and hepatitis C which needed a years treatment, was such an enormous blow to me and my two boys that were staying at home with me.
    Nurses, doctors, consultants were not aware of this illness and the task explaining everything little piece of information over and over again became quite daunting. Advice from people who had no kids and no hepatitis C was always negative ( in my opinion) but probably well meant.
    Having no information was crippling because the first thing a woman/man thinks of is their kids especially when they are infected with a deadly disease

    I had four boys and I tried to tell my eldest and was met with ” oh great I have just met a new girlfriend and we were thinking of going on holiday’ Guilt, blame and shame spinning round my head. No. 2 son was wrapped up in his new relationship with new baby and honestly the last thing I wanted to start talking about was Hepatitis C. No 3 son did go to the clinic and managed to get a test for sexual diseases. No. 4 looked at me as if I was the latest alien outcast. So all in all it was not a good experience and no support was even worse

    After 2 years waiting for the treatment and feeling more and more contagious my knowledge expanded but only ‘snail mail’. My sons no. 2 and 4 were with me at home while on tx. With limited amout of information we proceeded through the journey of hell. I have often wondered what they felt watching me go through treatment and watching their Mother turn into a person who could not think, speak properly or act as the mother they had known

    My first injection knocked me sideways for two days with vomiting and frequent visits to the loo and my head banging. What was this stuff!! I did not know how to explain how I felt so how could I tell my kids.

    Knocking on social services door and psychiatrists and anybody that might listen all turned to a big rejection I needed someone to help my lads to deal with me. They were at critical points in their life with the youngest just starting secondary and the other just starting to look for work. I was of no help whatsoever.

    They have told me now that they were frightened to leave me on my own as I was babbling away in a manic state tony youngest child and talking about death!!! YeasI know, it was terrible but it wS if I was in this big bubble and could only talk but not understand. No comprehension what the real effect was on them as I felt I was too bust trying to keep myself alive

    My youngest child was 13 years and a male but he wanted to sleep beside his mum and that was frowned upon by social services. Anyway at last they put me into the drug service because most people catch it from sharing needles.

    They were helpful but the whole scenario of trying to keep a family together and not being reliable proved to be a change of roles. My youngest son took charge of things and schoolwork was neglected.

    I could write a whole book but I think you get the picture and that was ten years ago I finished treatment and 6 months later started menopause so my mind and body were certainly not in sync at all and remained that way for years

    I attende countless conferences and Hepatitis became my life and it was on my mind every day. Details from top consultants were irregular and I started also to doubt them especially when I asked about the treatment having an impact on menopause . Blank faces stared back at me because they were all men and nobody could answer this simple question I found out by other women they felt the same way and when you reach a certain age then the menopause will inevitably come along

    I became an advocate and was emotionally involved with anybody that had hepatitis C. If they wanted to talk I would tell them as much as I knew about Hepatitis C. But after 12 years of advocating and advising people and working voluntary, I became