Telling a Child He or She Is Infected with Hepatitis C

Nicole Cutler, L.Ac., MTCM, Dipl. Ac. (NCCAOM)® July 22, 2014

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:

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.
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.

References

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/TellChild_HCV.pdf, How To Tell Children They Have Hepatitis C, Christine M. Kukka, Retrieved June 22, 2014, Hepatitis C Support Project, 2014.

http://www.hep.org.au/documents/factsheets/PregnancyBabies2013.pdf, Hepatitis C factsheets – Pregnancy Babies and Children, Retrieved June 22, 2014, Hepatitis NSW, 2014.

http://www.liverfoundation.org/chapters/rockymountain/doctorsnotes/pediatrichcv/, Hepatitis C in Children, Michael R. Narkewitz, MD, Retrieved June 22, 2014, American Liver Foundation, 2014.

http://www.pkids.org/files/pdf/phr/10-02talkingabouthep.pdf, Talking to Children, Retrieved June 22, 2014, Parents of Kids with Infectious Diseases, 2014.

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