When my husband and I decided in 2008 to adopt from China’s Special Needs Program, we knew we would have to fill out a medical check list. One of the needs we readily checked was Hepatitis B. I had contacted HepB as an adult and had cleared the virus without really getting sick. Of course, I didn’t fully understand the difference between chronic HepB and acute HepB, but we put the check mark in the little box and continued down the list. Five weeks later we were called with a referral of a 2 1/2 year old girl whose was HepB positive. We were elated and immediately said yes.
Eight months later, in January of 2009 we traveled to China and became the parents of an amazing little girl.
In the months preceding travel I researched as much as I could about HepB. I joined the HepB Yahoo group. I spent hours on the internet. I learned the importance of the HepB vaccine, Universal Precautions, researched treatment options and pondered the question of, should we tell or not tell? I encouraged my husband’s father to receive the HepB vaccination series and had titers drawn for our other children. I wrote an email to our travel families informing them of my daughters HepB status and asking them if they had any questions. Everyone was supportive. We were ready!
Our trip to China was fabulous. Our daughter was almost three years old and perfect in every way. We were in love. Her HepB was a non issue on the trip, we spent the time getting to know our beautiful daughter. We reentered the USA on January 23rd, our daughters third birthday!
We scheduled an appointment with a pediatric gastroenterologist shortly after we arrived home. We had absolutely no information on her HepB. As far as I know her blood was not routinely tested in China. The doctor informed us that she was in the immune tolerant phase. Her body had the virus, but it didn’t recognize it and was not fighting it. Although her blood showed high levels of the virus, she was not ill, her liver enzymes were normal and an ultrasound showed that her liver looked fine.
We have had her blood tested twice a year and have had a yearly liver ultrasound. No treatment has been recommended although now there are being trials done to determine if treatment should be started whether or not liver damage is occurring. We will be making an appointment soon with one of the top HepB specialists in the US to get a second opinion.
So really, on a day-to-day basis, the HepB is a non issue. We have told family members and close friends. I do tell the school nurse although our daughter’s HepB status is not written on any of her medical forms. The entire school has always been instructed to use Universal Precautions. We have never had any negative feed back from anyone who is aware of her HepB. But I know that is not the case for everyone. It is probably one the hardest decisions a parent of a HepB child will have to face: to disclose or not to disclose? Legally you have the choice to not disclose. If you are not sure than I recommend not telling anyone right away. You can not take back the information once it has been shared.
The next few years flew by and my daughter turned five. After one of her blood tests and doctor visits she asked me why she has to have blood drawn. I thought carefully about my answer and told her it’s because her body has a virus that lives in her blood and the doctor has to keep checking that it is not making her sick. Another year or so passed and then she asked me if her virus has a name. I told her it does and it is called Hepatitis B. We talked about how it’s important that no one touches her blood or anyone else’s blood because we don’t always know if a person is carrying a virus. We also discussed how her HepB is private information because not everyone understands it and may be frightened by it.
My daughter is a sponge when it comes to knowledge and just soaks everything up. She also questions everything and I knew I had to be more honest with her than not. I’m pretty sure that she gets the part about it being her private information so I was pretty taken back when last summer she approached me at the campground and said, “Mom… I hope you are not mad… but I told Susie (not real name) about my HepB.” She continued, “You know… she told me about her issue so I thought it was fair that I tell her about mine.” Now I know this little girl and I could not imagine what “issue” she had. So I asked my daughter what Susie had told her. She leaned in and whispered, “Well… she has a lazy eye!” Of course. I then had to talk to Susie’s mom, who is a friend, just in case Susie felt the need to share my daughters health history!
This year my daughter is in third grade. Her teacher did not know of her HepB status. Until, that is, the teacher gave the kids an assignment: make a list of ten things that I don’t know about you. Yup, you guessed it. Number one on her list: “I have Hepatitis B.” This list was written in school and handed directly to the teacher! So the next day I had a conversation with the teacher. She assured me that she was, not shocked, OK with the information, and would not be posting the lists outside in the hallway!
This past week has been a joyous time in our home. We celebrated our daughters sixth Forever Family Day. We thank God everyday for allowing us to be her parents. I would adopt another child with HepB in a second. And although the future can not be predicted, I have every reason to believe my daughter will love a long and healthy life.
— guest post by Kathie H.