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Adopting a Special-Needs Child with Hepatitis B

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William - Waiting child with HBV. Contact advocacy@anorphanswish.org for more information.

If you are considering the adoption of a special needs child, I would encourage you to consider adopting a child with Hepatitis B. Children with HBV are available for adoption around the globe. Remember that one third of the world’s population has been infected with HBV.  The transmission of HBV from mother to child during delivery process is very common in many parts of the world. HBV can be prevented in 95% of cases for those that are vaccinated and receive HBIG within 12 hours of birth, with the other two shots of the series to follow, but unfortunately these options are not available to many infants around the globe.  Because HBV is a silent infection, many moms are not even aware they have HBV, and few are screened and identified during pregnancy.

Adopting a child with HBV is very manageable. However, it is good to get educated before you move forward.  Kids with HBV may require treatment when they return home, although most do not. This will not be determined until your child arrives home and has a thorough work-up with a liver specialist.  Please don’t ask for additional testing of your child, as the additional needle sticks raise their risks for infectious disease.

Most children do not have symptoms with their HBV.  They appear perfectly healthy, and they are healthy with the exception of having the HBV virus circulating in them.  They sleep, eat and cry, just like any other baby, and they run, play, captivate and steal the hearts of their parents just like any other child.

Quite often treatment is not necessary for a child with HBV. They have high viral loads, which do make them infectious, but the good news is that the HBV vaccine is a requirement in nearly all states, and licensed day-care facilities. These elevated numbers sometimes worry parents, but the kids are just fine and it is merely a stage of the virus, which tends to occur children infected at birth or early on.  Kids rarely have symptoms and their liver enzymes and blood work are typically within range.   Some children seroconvert, or move into a quiescent, less infectious state on their own with no treatment, while others continue on in this steady state without any intervention other than bi-annual or annual lab work and a visit to a pediatric liver specialist.

However, some children do require treatment when they are young. This is not as common, and is determined by blood work that shows that the immune system is trying to attack the virus in the liver cells. This may sound frightening, but once again, the kids are rarely symptomatic.  Doctors may choose to treat a child in order to see if they can get the child to seroconvert, or move to a more benign stage of the virus’ lifecycle.  For young children, this may involve an immune modulator such as interferon or peginterferon , or in older children, or different circumstance, an oral antiviral.  As a parent, I have been through both, so I can tell you that the protocol is manageable.  There are pros and cons to each treatment protocol which you will want to discuss in detail with your pediatric liver specialist should treatment be recommended.

Believe it or not, one of the tougher decisions is figuring out how you want to handle your child’s personal information.  Often there is a stigma associated with HBV which is primarily borne of ignorance and lack of HBV awareness.   I admit that I had very little understanding of the virus when we came home with our daughter!   The tough part is deciding how you want to handle this information.  It’s a family decision, and until you decide how you want to treat it as a family, you are better keeping this information private.  I would highly recommend speaking with other parents that have experience, both good and bad, with the disclosure of their child’s HBV status.  There is a wonderful, on-line support group you might like to join to discuss the adoption of a child with HBV.

Living day to day with a child with HBV is simple. The biggest transition is learning to deal with preventive measures or general standard precautions, which we should all be following anyway!  All this really entails is making sure that all blood and body fluid spills and contacts are prevented by using a barrier between the bleeding person and you.  Blood spills are cleaned with a fresh, diluted bleach solution.  Should an exposure occur, prophylaxis should be given.  Here’s the thing… we should be doing this with EVERYONE and not just a known entity! It keeps everyone in your family infection free from all sorts of things!

How do you prepare to bring a child with HBV into your home?  It’s simple.  If everyone in your home has not been vaccinated against HBV and had titres checked, then they should do so.  The HBV vaccine is a safe and effective three shot series.  Four to six weeks following the last shot of the three shot series, you can ask that your doctor run quantitative anti-HBs to be sure that your titres are above 10.  If you have built adequate immunity to the virus through vaccination then you and your loved ones will be HBV free for life.  With a safe and effective vaccine, like the HBV vaccine, this is the way it should be!

So when you are considering adopting a special needs child, please consider a child with HBV. Even if you do not choose HBV as a special need, be sure to have your adopted child screened for hepatitis B. HBV is endemic in so many portions of the world. This is how we discovered our daughter’s infection. Had she not been screened, we would have likely never known her HBV status, and although this might not affect you on a daily basis, it is something that needs to be monitored by a pediatric liver specialist. In our case, our daughter needed treatment, but because there were no symptoms, I am grateful we had her screened upon her arrival home.

No matter where your children are grown – within your womb or another, having children truly is a leap of faith.  Keep an open mind. Adoption is a wonderful way to grow your family and choosing to adopt a special needs child with HBV is a great addition to your family.

Living with Hepatitis B

Thoughts on Disclosure for Children with Hepatitis B

If you are a family with a child with HBV, or a family considering the adoption of a child with HBV as a special need, it is important to consider how you will manage your child’s hepatitis B information. As an adult you are making your own personal disclosure decision, but when you are dealing with your child’s personal information, it is a decision that needs to be made with the entire family to be considered. Think long and hard. Once this information is out, you cannot take back.

Something that I did not truly consider when we were making this decision was the fact that this was not really my information, but rather my child’s information. Our child was a baby at the time. We could not know her personality, and what kind of a person she would become with time. We were fully immersed in the baby scene, and were not even thinking about the teenage years. Little did I know that teens have an opinion about everything. My kids lost interest in discussing their adoption story at the store check-out by the time they entered elementary school. Certainly no one wanted to be the adopted kid with hepatitis B. No one wanted to be the adopted sister of the adopted kid with HBV. I cannot speak for other kids, but that was the case with our own children. In general, kids want to blend.

Initially we were concerned about sending the wrong message to our children by not disclosing this information. There should be nothing to hide, so we forged ahead with our information in a couple of small, selective circles. These were carefully chosen groups, nothing permanent like our neighborhood, since we could not afford to move if there were repercussions. Disclosure was abruptly halted after a confrontation with the early intervention team at our home school. Had we not been under the advisement of counsel, I fear the situation would have resulted in a breach of information we might not have been able to contain. I have heard similar stories from other adoptive parents, and it makes me cringe every time.

Parents are fiercely protective of their children – especially when they are young. I have heard heart-wrenching stories of broken friendships, neighbors that no longer speak, and the distancing of family members, all over the disclosure of information that perhaps should not have been imparted. But who knows who will be accepting and tolerant, and who will refuse to let your child play next door? Sadly, people lack basic information about HBV, and even in the U.S., there is a stigma associated with infectious diseases. They do not know anything about HBV, or how it is transmitted. They may not even be aware that their child is vaccinated against hepatitis B. They may choose to err on the side of caution, and choose not to have your child play with their child.

Although we made a family decision to not disclose, there were people that we chose to tell. Disclosing to family did not go the way I had expected, and I’m glad there are a few states between us. Fortunately with time and distance, people forgot about it, because they never fully understood it from the beginning. Disclosure to selective friends worked for us, but there were few that were told. We disclose to all treating physicians.

On the pro-disclosure side, I am aware of families that have disclosed their child’s HBV information and it works well for them. They are pleased with the support they receive from friends, school, church and family. They have made the decision to educate and raise awareness as a family. I commend that. Perhaps I am even a little envious, because that is how it should work! Unfortunately it did not work well for our family, where we live. Now that my daughter is in high school, she is okay with her HBV status. Fortunately she’s not truly “out there” with her information, but she has contributed in her own way to raising HBV awareness in selective circles.

To disclose or not to disclose, it’s a family decision. Think about it, and do what is best for your entire family.

Hepatitis B Prevention

Options for HBV Vaccine Non-Responders

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Are you a hepatitis B vaccine non-responder? Approximately 5-15% of people who receive the vaccine are considered non-responders. This is especially important for health care workers, families living in households with people that have HBV, and others who may be at increased risk of exposure to HBV.  A vaccine non-responder is someone that does not build up an adequate immune response after receiving two, 3-shot series of the HBV vaccine.  In other words, they complete one series of the HBV vaccine, and follow it with a surface antibody test (HBsAb or Anti-HBs) 4-6 weeks following the last injection of the series.  If the anti-HBs titre is not greater than 10IU/l, than the series is repeated, preferably with an HBV vaccine from a different manufacturer, and the person is once again tested for immunity by testing for adequate anti-HBs. (See previous blog, “Got Hepatitis B? Keeping loved ones safe though HBV vaccination” for details)

Fortunately there are other options for those concerned with being an HBV vaccine non-responder. There is a higher concentration of the HBV vaccine recommended by the CDC that is used for patients undergoing dialysis, and for those that are immune suppressed.  It is a 40µg/ml concentration. If it has been one year or less since you completed the three-shot series of the regular concentration of the vaccine, you can try one intramuscular dose of 1.0 ml of the 40µg HBV vaccine.  If it has been more than one year since your last three shot series of the vaccine, you can repeat the entire three-shot series with the 40µg concentration of the vaccine.  Follow up with an anti-HBs titre test 4 to 6 weeks following the last injection to ensure it is greater than 10 IU/l, and that you have adequate immunity.

If you continue to remain a non-responder, you can try a series of as many as five intra-dermal injections, given every two weeks, using the 40µg concentration of the HBV vaccine.  Dose one consists of 0.10 ml of the 40µg/ml vaccine, followed by the same dose two 2-weeks later.  At that time an anti-HBs titre test would be drawn to check for immunity.  If there was not adequate immunity, a third-intra-dermal dose of the vaccine would be given two weeks later.  Anti-HBs titres would be checked every two weeks and the patient would be given another intra-dermal injection up to a total of 5 intradermal injections of the 40µg concentration of the HBV vaccine. Don’t forget to ensure that your anti-HBs titre is greater than 10IU/l.

Please note that the schedule for the series might vary depending on the study your doctor chooses to follow.  However, it is recommended that the higher concentration (40µg) of the hepatitis B vaccine be used for best results.

Baruch S. Blumberg Institute