What Our Daughters Taught Us About Hepatitis B

When our family first began the process of adopting a child from China, we did so because of the special needs issue.  We already had birth children who were very healthy and we felt so blessed...We knew we wanted to adopt a child with some medical concerns and so we chose our agency's China program.

Shortly thereafter, we bought a computer and had Internet access and began learning even more about issues relating to China adoptions, one of which was the possibility of the child being Hepatitis B positive.  Initially, it scared us to death, mainly because we were uneducated and uninformed.  But, because figures indicate up to 30% of the population of China may be infected with it, we learned some of the basic facts, though nothing detailed. We sent away for literature from various organizations and had it all neatly stashed away in a briefcase.

Our daughter came home from China and we had her at the doctor within 1 week after our arrival. The standard battery of recommended tests was run on her and everything came back "ok", for which we were grateful.

Six months later, we had her retested for Hepatitis B, as is recommended--for a child to truly be considered free from Hepatitis B, they need to have two negative Hepatitis B tests, 6 months apart. (I am still surprised at the number of parents who do NOT run the second test and assume that, because their child is negative at their first "after arrival" Hepatitis B test, that everything is OK. I am also surprised at all the people who assume a "negative" Hepatitis B test on referral paperwork is accurate.)  Shortly thereafter, her pediatrician called with the word that she was Hepatitis B positive!  Had we not been as moderately informed as we were, we probably would have taken it very hard. Instead, I started asking questions, based on what I'd learned.  I think the doctor was surprised (pleasantly so) because, when I received a copy of the consult sheet from his initial phone call to me, written across the bottom was, "Mother is very well-informed about Hepatitis B issues".  And to be truthful, I honestly didn't think I knew that much, but I did know enough to realize that first, our daughter was going to be OK and that, secondly, this wasn't the worst thing in the world that could happen to her (or us for that matter).

I made some calls to a physician from the University of Minnesota International Adoption Clinic and to Dr. Jerry Jenista. Both doctors were superb!  They gave me some ideas for additional testing we needed to have on our daughter.  It was also determined that she was NOT infected perinatally. If she was, she would have tested positive at that very first testing done shortly after she came home. More than likely, though obviously this is not known for 100% sure, she was infected at 2 months of age when they tested her for it back in China, for her referral physical.

We took her in for testing to check for DNA levels, liver enzymes, etc.  We learned that she had a very active, chronic case.  Her liver enzymes were elevated 9-10 times higher than what was considered normal for a child her age.  That, I'll admit, was alarming in a way, but at the same time, my husband and I had a sense of peace about this entire situation.  We had committed our daughter's situation to the Lord and we knew that whatever happened, He was in control of the situation and that He would take care of her.  I would be remiss in not mentioning this, because our faith plays a very active role in our lives.  I realize this isn't the way everyone looks at things, but that's the way it is for our family.

For the next 8-9 months, we had her tested at regular intervals and the situation remained the same--very high liver enzymes, continued Hepatitis B seropositivity, etc.  Several months later, our daughter was referred to a pediatric gastroenterologist physician for a liver biopsy, as it was felt she may be a candidate for interferon therapy, which right now, appears to be the best "cure" for Hep B. However, it doesn't "work" all the time, so nothing is guaranteed. But it was an option.  Since the hospital was out of town, my husband took her and I remained with our other children (very hard to do!).  She had a liver ultrasound, which revealed no damage (they were surprised) and was scheduled for the biopsy  2 days later. In the interim, she had some more blood work done.  She was laying on the table, IV in place, and waiting with my husband for the dr. to come in to do the procedure, when he walked in, newly-returned blood work results in hand. While she was still testing positive, her enzymes had taken a drastic plunge down to just 5-10 points above normal levels.  There were some other quirky things about the blood work results that I can't remember, but the physician told my husband "something" was happening.  At that point, with out the elevated enzymes, she was not a good candidate for interferon so he sent her home with instructions to have her retested in 6 weeks.

I'll never forget the day her pediatrician called, a very happy sound to his voice.  Her blood work had come back indicating she was immune to Hep B, had normal liver enzymes, no antigens, nothing at all associated with being Hep B positive....in short, she had seroconverted.  We were told spontaneous seroconversion in pediatric Hepatitis B cases occurs only 1% of the time. I have since learned of so many other families in our situation and am convinced, though I must stress I have no medical proof to back up my assumptions, that the rate is higher than 1%.

Our experience with Hepatitis B had taught us one thing--this was something we COULD manage in a child. So, when we adopted again, we put Hepatitis B down as something we would most assuredly accept in a child. No hesitation on that whatsoever!!  And sure enough, when we received our referral, it was for a child who was Hepatitis B positive.  We alerted the pediatrician ahead of time and made plans for what tests we wanted run on our new child and he made the comment to us, "If anyone can handle this, you two can."  While that made me feel good, I realized we hadn't done anything special or that deserved acclaim, but what we had done was educate ourselves. That makes all the difference.

Our new child came home a few months later.  When we were at the orphanage, the staff nurse made a point of telling me about the Hepatitis B, to which I replied that yes, we did know about it and had specifically requested this condition.  She seemed relieved to know it wasn't a big deal with us (which it wasn't).

When the blood test results came back, our pediatrician called and said, "Well, you did it again" to which I said, "Did what"? and he said, "She seroconverted".  He had a copy of the Hepatitis B results that we received, with the referral, and he had stated the same thing Dr. Jerry Jenista had stated after I faxed her a copy, that it was a regular, standard case of perinatal transmission.

My husband and I feel we have learned many things throughout our two experiences with this condition.  I'll list them, but keep in mind these are in random order...

1. Hepatitis B seropositivity in a child is NOT the end of the world!

While we most certainly wouldn't have chosen this for either of our children, it wouldn't have mattered one little bit had they not seroconverted. There are far worse things you can experience medically with your child than having him or her be Hepatitis B positive.

2. EDUCATION is one of the keys to dealing with this.

Our advice to families, especially to those adopting from China or Vietnam, is to go into the adoption ahead of time assuming he or she is Hepatitis B positive and educate, educate, educate. Get on the Internet and read everything you can find about Hepatitis B.  Send away for information and read it. The more you learn, the better informed you'll be and the better able you'll be to advocate for your child should he or she test positive after they come home.  If, as is most of the time, your child comes home and tests negative (remember--two tests 6 mo. apart), then you'll be no worse off. And the more you learn, the more you'll understand that Hepatitis B is not to be feared as much as you think.

3. Vaccinate yourself for Hepatitis B.

Our children's pediatrician says that, when he's doing well baby checks and it's time for the child's Hepatitis B immunizations, he always asks the parents if they're immunized. If not, he suggests it.

4. Do not assume a negative Hepatitis B test at referral is accurate!

I don't know how it is with Vietnam, but with China, often times the wrong test is ordered, the sanitary conditions aren't up to par, etc... You simply are doing yourselves a big disservice if you take a negative Hepatitis B test at referral as a statement of fact.

5. Don't forget to have two tests run 6 months apart. 

As I said above, I am continually amazed at the numbers of parents who don't have that all-important 2nd test run 6 months later.

6. Should your child test positive, have lots of literature for your doctor to read.

You'd be surprised at how some physicians don't know enough about pediatric Hepatitis B! Both the pediatrician and the pediatric gastroenterologist told me they were surprised at how much we knew.  The pediatrician told me I knew more than he did (which I doubt!!) and the GI doctor told me he was very pleased with the level of knowledge we had.  He and I were able to converse on the phone, and my husband was able to speak directly with him, re. the situation with our child and we understood all the terms he was using. This doesn't make me a candidate for a medical degree or anything, but it does prove a point that the more educated you are, the better off you'll be able to understand your child's situation and be a better advocate for him or her should the situation arise.

7. One of the best resources on the web is PKIDS, Parents of Kids With Infectious Diseases.

This is not solely dedicated to Hepatitis B, but it has lots of resources, links, etc for Hepatitis B and other infectious diseases.  This would be an excellent starting point for prospective adoptive parents to begin their pre-adoptive Hepatitis B education.

8. Should your child test positive, tell as few people as possible. 

We told hardly anyone, and I mean that.  We only shared the news with a VERY few close, close friends.  Even though our children are "ok", I am still very big on protecting their privacy and we do not share the news of their seroconversion with hardly anyone.  In my personal opinion, ignorancy regarding Hepatitis B and it's potential ramifications is the biggest enemy my children faced, not the Hepatitis B. We were, and are, very careful about protecting their privacy.  Some people have varying opinions as what to do with school, daycare, church nursery, etc. and that is something that has to be done on an individual basis.  I have heard cases of where the child's personal info was "discussed" in school and church settings and the information got out to the wrong people-- and one family we know had to leave a church after the information got out, even though it was shared in confidence (fortunately, they found another church where they were welcomed).  With our first child, we found out about the positive status when there was one more Hepatitis B immunization left in the series and we chose to continue that.  That way it would be on her shot records.  We had started the series with our 2nd child, just 1, and discontinued after that at the physicians request when we found out about the seroconversion.  The shot records now read "immune to Hepatitis B". I know some families who don't have the series done, but the physicians have written "immune to Hepatitis B" on the shot records.  Again, in my mind, this is something that has to be handled in the way that works best for the family--that is to say, who to tell, who not to tell, what to do about Hepatitis B immunizations, etc.

9. Maybe someone reading this would consider adopting a child with Hepatitis B status!! 

In our personal opinion, it's one of the easiest special needs to manage. I have seen postings on the APVietnam list looking for families for children who are positive and have seen it on other adoption forums and such.... There is a need for families who are willing and able to adopt a child with Hepatitis B.

I hope this has been helpful to some families. Please remember that it's our own personal experience and our own opinions. Every family has to choose to handle this in the way that works best for them. I'd be happy to answer questions if anyone has them. You can write me at kim@comeunity.com.