Hepatitis B and Adoption

3 05 2010

Adoption is fun but scary, and full of love and uncertainty—even when the process goes perfectly.

Sometimes, during the adoption process, the parents-to-be get news that makes them pause, and they wish they could gaze into a crystal ball to see the outcome of each decision they have to make, especially if the news is that the child with whom they’re matched is infected with the hepatitis B virus (HBV).

As you work through your decisions, here are some thoughts for you to consider from PKIDs parents who’ve adopted HBV+ children:

First, ask your healthcare provider about the HBV vaccine. You should be protected against this virus, even if you don’t end up adopting a child who is HBV+.

For persons in developed countries who are adopting domestically and have identified the birth mother, ensure that the birth mother is screened for, among other infections, hepatitis B. If the birth mother is positive for HBV, make sure the baby is vaccinated against hepatitis B and receives hepatitis B immunoglobin (HBIG) within 12 hours of birth. This helps to prevent transmission of the virus to the newborn.

Although this protocol is usually effective, you will not know for sure if the baby is infected until the baby is screened for HBV 1or 2 months after completing the three-shot hepatitis B vaccine series (at least 9 months after birth).

In some countries, the tests for HBV infection may not be reliable or may not be interpreted correctly, and it’s possible the child was never tested for HBV infection, although the paperwork may say otherwise.

If you’re adopting internationally, you won’t know for sure about your child’s HBV status until you get the child home and have him or her screened for the virus.

As you consider whether or not HBV is a disease for which you’re prepared, you can learn more about the infection and treatment options for children in PKIDs’ Pediatric Hepatitis Report. The Hepatitis B Foundation also has lots of information.

Search the Internet for articles and studies specific to HBV infection in children.  Keep in mind that treatment options for children are different than those for adults, so not all of the information you find will apply to kids.

Join and post on PKIDs’ listserv and the HBV_adoption listserv to interact with families living with HBV.

Be aware that there is a stigma associated with HBV.  At PKIDs, many families have experienced severe problems within their own extended families after disclosing, as well as problems at school and among friends and colleagues.  Should you decide to adopt an HBV+ child, you need to be aware of this so that you can determine to whom you will disclose your child’s medical information. You can always choose to disclose at a later time, but you can never take that information back, once it is out.

Your child’s lab results from his or her birth country may not give you the status of your child’s HBV infection.  Test results are often outdated, lacking, or inaccurate, and at best provide a snapshot at the time of the test.  It’s unwise to base your adoption decision on international lab work, and you should not request additional testing.  HBV is readily spread by needle re-use, which is problematic in many countries. You actually put the child at risk by requesting more lab work, which will be re-done anyway when your child arrives home.

It’s impossible to say when or if a child will need treatment.  No two HBV infections are the same. At a minimum, and even if the child is asymptomatic, there will be regular lab work that needs to be done.

All of this is manageable, and daily life with a child with HBV is typically very normal.  However, there are kids who need treatment and for whom the infection is serious.

Most people infected as babies who then go on to develop a chronic or lifelong infection go decades without needing treatment, and many live a long, healthy life and die of old age.

Others need treatment while they’re still kids.

There is no true cure for HBV infection, and those infected at birth are at increased risk for advanced liver disease or liver cancer before they are 30 years old.

A lot to think about, but we hope we’ve given you some tools to use as you determine what’s right for you.