Chronic hepatitis B is not a death sentence. In the pre-hepatitis B vaccine days, physicians did not do a lot of hepatitis B screening except of blood donors. Since there was no treatment or prevention for the infection, there was no reason to screen for it. Thus, the only persons with hepatitis B who came to attention were those with serious or life-threatening complications. These same patients were those written up in medical journals and textbooks. Thus, entire generations of physicians learned about hepatitis B from the sickest of patients. Now that screening of otherwise well people is far more common, we have begun to realize that not all hepatitis B is a disaster waiting to happen. Although complete data are not in, we realize that the majority of chronic carriers will never have any adverse effect of their infection at all. Methods for detecting and treating complications of hepatitis B are improving every year. With careful follow-up, most children with chronic hepatitis B can look forward to a full and normal life.

So chronic hepatitis need not be a dark cloud hovering over your daily life. It is certainly not something one would voluntarily choose, but it is not the worst thing that could ever happen to your child either. As both a parent of a carrier child and an infectious disease expert who deals with hepatitis B on a daily basis, I think I have heard just about every possible adoption/hepatitis B scenario. Fortunately, after the initial anger, shock and panic, most families do come to some adjustment with the condition.

One of the most confusing aspects of hepatitis B is what to do with the child who has chronic infection. From China, the majority of children will have acquired their infection parentally (from mother to baby at or near birth) or early in the first year of life from other children in the orphanage. The "bad" thing about such early infection (when the immune system is not yet mature) is that 90% or more of these cases become "chronic," that is, they last longer than six months, usually for life. The "good" thing is that the immature immune system does not recognize the virus as "different" and so there is very little or no reaction in the liver. Thus, the "liver enzymes" tend to be normal or only slightly elevated.

There is no absolutely applicable information on what happens to infected adopted children from other countries, removed to US standards of medical care, away from dietary and environmental influences of their native country. Long-term data on Chinese men and Alaskan Eskimos seems to indicate that there is about a 1 in 4 life-time risk of some complication such as scarring (cirrhosis) or worsening liver disease. Alcohol and certain chemicals, medications and other kinds of hepatitis make the condition worse but these can be avoided.

For the chronically infected carrier child who is otherwise healthy, most experts recommend annual screening only. At this visit, the child is examined, a hepatitis B panel and liver enzyme studies are checked and the parent's (and child's) knowledge of hepatitis B is reviewed. For most families, this is a social visit only in that no medical intervention need be taken. This is usually the appropriate plan for the child through the early teen years.

Once into the teens, and certainly in the twenties and beyond, the patient should be seen by a gastroenterologist and infectious disease expert twice a year. Besides the tests listed above, most physicians will add in screening for primary hepatocellular carcinoma (a cancer than can be treated if found early). The screening is usually a liver ultrasound and/or an alpha-fetoprotein level (blood test). New and better tests are in development.

For the chronically infected child who is not growing and developing normally, whose liver enzyme tests are consistently three or four times the upper limit of normal (above 150 or so), or who has a complicating infection such as hepatitis C, hepatitis D or HIV, more frequent follow-up may be necessary, but usually not more often than every three months. This is the subset of children who ay need liver biopsy, who may be considered candidates for interferon or other anti-viral medication. Paradoxically, this group of children with "sicker" livers is also the group of children more likely to "spontaneously convert" hepatitis B serology to a more favorable profile (occurring in about 1% per year).

For most families and children, hepatitis B is a long-term commitment to educating oneself and assuring good medical care. Only a few children face drastic intervention. Like high blood pressure or high cholesterol, you manage hepatitis B; don't let it manage you.