Hepatitis B: Debunking the Myths

March 8, 2012 Eileen, HepB+ 4 Comments

ADOPTING A CHILD WITH HEP B WILL PUT MY FAMILY AT RISK: A few years ago, a woman looking to adopt a special needs child sent me several emails, asking questions about Hepatitis B. After a fairly long, friendly exchange, her last email included the following line, “I guess I’m just not comfortable bringing in a child that would put my other children at risk.” I sat there, mouth hanging open, wondering how, after all we’d talked about, she still had this completely false idea. I also wondered if other people had that same misinformation. Did other people look at me and think that I am O.K. with putting my other children at risk? Because I’m not.

We are incredibly blessed to have a highly effective Hepatitis B vaccine. In most states, this series of shots is required for school admittance. When a family plans to adopt a child with Hep B, they should first make sure everyone has had the full series and then take the added precaution of getting everyone’s titer checked to be sure they are immune. From there, well, don’t worry about it. You and your family are protected.

YOU CAN GET HEP B FROM EATING CONTAMINATED FOOD: With the alphabet of hepatitis viruses out there, it’s no wonder there’s confusion. Hepatitis A, the most common in the hepatitis family, is the one you get from contaminated food and water. Hepatitis B is passed through blood to blood contact. This can be from mother to child, through infected needles, or sexual contact.

HEP B CHILDREN WILL LOOK AND FEEL SICK: I can give this a resounding NO! Never once has someone looked at my children and asked if they are ill. They are the picture of health. They don’t have yellow eyes or skin, they don’t tire more easily than other children, they don’t have abdominal pain. They look and feel great.

I met a woman years ago who first learned of her Hep B status as a young adult when she went to give blood. She was completely shocked that there was anything amiss and went straight from her doctor’s appointment back to the Olympic Training Center! Obviously, her Hep B was not slowing her down.

THE BIRTH MOTHER OF A CHILD WITH HEP B WAS A DRUG USER OR SEX WORKER: Hepatitis B is endemic in China. Of the estimated 350-400 million people infected with the virus, one third live in China. In Asia, the most common way a person becomes infected with Hepatitis B is through the birth process. Their mother had it, who probably got it from their mother, who got it from their mother. Many of these mothers may never even have known that they had the virus themselves, let alone that they were passing it onto their child. In some parts of China, it’s estimated that as many as 1 in 5 people are infected. These are not individuals living on the fringes of society.

WHEN THEY GROW UP, PEOPLE WITH HEP B CAN NEVER HAVE A NORMAL SEX LIFE: Again, what a blessing to have the Hep B immunization series! Not only can they have a normal sex life, my daughter can have children and those children, through a series of shots started right after birth, have over a 95% chance of being completely Hep B free. The cycle of mother to child transmission can stop dead in its tracks.

HEPATITIS B IS RARE: Worldwide, 1 out of every 12 people have Hep B or C. After a friend of mine learned of my daughter’s Hep B status, she said, “I’m just so shocked. I’ve never met a person with hepatitis.” I told her I was sure she had, she just didn’t know it.

THIS IS A TAXING SPECIAL NEED: This is a very, very manageable special need. Your child will need blood work and will see a pediatric gastroenterologist every 6-12 months For most kids, that’s the extent of the need. For some, they will require treatment. Depending on which treatment is chosen, they will either take a pill or get shots. Our daughter needed treatment and we gave her one shot a week for a year. I wouldn’t necessarily want to do it again, but it was very manageable.

IT’S BETTER FOR THESE KIDS TO REMAIN IN CHINA WHERE THERE’S MORE ACCEPTANCE TOWARD THE VIRUS: One would think that with such a large percentage of the population infected, there would be more acceptance. The opposite is true. Discrimination runs rampant and although laws have recently been passed insisting that these children be allowed to attend school, there are still children who will be denied a basic education because of the result of a blood test. In China, there is a terrible stigma associated with the virus.

THE OUTLOOK IS POOR FOR CHILDREN WITH HEP B: Our daughter’s doctor is one of the foremost experts in pediatric Hepatitis B. She’s seen it all and remains very, very optimistic. At a conference, I spoke to another expert. I asked her how many liver transplants she’s had to do because of Hep B. She said none. I asked her how many cases of liver cancer she’s diagnosed as a result of Hep B. She said none. Although there are very real risks, the great majority of people with Hepatitis B will live long lives and die of something completely unrelated to the virus they carry in their livers.

When people ask me about parenting a child with Hepatitis B, I tell them it’s no different from parenting any other child.

Just enjoy them.

4 responses to “Hepatitis B: Debunking the Myths”

  1. Lori says:

    I watched the video of your daughter that you posted recently that suggests she no longer tests positive for Heb B. I’ve been told that Heb B is not curable, but the shots seemed to have cured your daughter. Could you elaborate more on this? Can the shots actually cure the disease? Thank you for sharing your story.

  2. Stefanie says:

    What a fantastic post, Eileen. I think that these ‘myths’ about HepB are so common these days – thank you for shedding much needed light on this subject 🙂

  3. Eileen says:

    Chronic Hepatitis B is technically “incurable”. However, in a very, very small percentage they may clear the surface antigen and even gain surface antibodies. That is what happened with our daughter. She tests negative for the virus and tests positive showing she’s protected against it. It’s like someone who’s had chicken pox and been through the disease and then is protected against it in the future. With a DNA virus like Hep B, there is a very slim possibility it could come back, hence the term “incurable”. However, as I’ve had it explained to me by several doctors, the only time they’ve seen that happen with someone who gained surface antibodies is when the patient’s immune memory is totally wiped out—say like with a cancer patient who goes through chemo and radiation. My feeling is that if my girl is in that type of situation, Hep B is the least of her worries! So, the simple answer is that it is incurable, but for a very fortunate few, they most likely will never have to deal with it again.

    Feel free to contact me if you have other questions.

  4. Lyn says:

    My daughter, adopted from Korea in 1981 at age 1 1/2, was found to have Hepatitis at age 18 when she signed up to be a Marrow donor. Who knew? She was healthy, brilliant, beautiful, and athletic and showed no signs of any illness. She takes good care of her liver now ;0) ….no alcohol or medications that would compromise her health.
    She has just given birth to her first child. Dad, Mom and son are doing just fine! My other three kids and both my husband and I are just fine as well. It wasn’t intentional, but I can really say: no problems.

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