Hepatitis B: It’s an Easy Special Need…Except When It’s Not

February 7, 2013 by nohandsbutours Eileen, HepB+ 8 Comments

If you ever check out special needs adoption forums, one of the most commonly asked questions, certainly in the top 5, goes something like this: Which special needs are EASY?

It’s an honest question and one that parents who’ve experienced raising children with different special needs have tried to answer. I’ve jumped in many times to advocate for kids with Hepatitis B. It’s generally a very manageable special need and one that’s not associated with extensive surgeries or therapies or restrictions. These kids appear totally healthy and usually just need a blood test and doctor visit a couple of times a year. I feel very confident telling a prospective parent that a child with Hep B will most likely be just fine.

However, I do worry sometimes when I read claims that the Hepatitis B virus is “nothing” or that it’s no more a challenge than near-sightedness or that it’s “just a bug.” If a parent has perceived it that way with their child, wonderful. But it’s as impossible to make a blanket statement that every case of Hep B will be easy as it is to suggest that every heart murmur will be easy. Some will be, some definitely won’t.

I’ve been in the Hep B world for nearly 6 years and in those 6 years, I’ve seen some kids who’ve been at the extreme end of the spectrum. Kids with cirrhosis, kids who have to wait until they’re neurologically mature enough to handle a heavy-duty drug like interferon, kids with mutations that are difficult to treat, kids who need frequent monitoring for liver cancer. None of those things are typical, but they happen. And for that small minority of kids, they require expert attention. Since pediatric Hep B is thankfully uncommon in the U.S., there aren’t many doctors who are experienced seeing it, let alone treating it. There are currently only 5 doctors in the United States that the Hepatitis B Foundation considers pediatric Hep B experts. Some parents fly their kids to their appointments.

Would I discourage Hep B adoption? Not at all! It’s a common special need in Asia and these kids will usually do fantastic. But, even 6 years later, I can still remember the shock of our first appointment home in the United States. My 11 month-old daughter had worrisome labs. The doctor mentioned interferon, something I’d heard was almost never used. She wanted to see her frequently. I thought it would be just once a year. She’d be performing a liver biopsy on her in a few months. Like with a needle? I stammered, “I thought she was just a carrier?” The doctor then asked me what I meant by carrier. I honestly had no idea, I’d just heard the term on a forum and liked the sound of it. Anything with the qualifying word “just”, couldn’t be so bad, right? So when the doctor asked for clarification, I bumbled through this explanation: “Well, being a carrier means that she has this, but it’s just there. It’s not, you know, hurting her.” Our doctor, whose bluntness I later learned to respect, said, “If she were older, she’d qualify for treatment now. Her liver enzymes are double what they should be. Her viral load is over 8 billion. Every day she has this, it’s hurting her.”

So, while we advocate for those precious kids who have a special need that’s captured our hearts, we’re doing the prospective parents no favors by downplaying or ignoring the unlikely, but still possible. Give them the straight scoop and then encourage them that if they feel so inspired to adopt a child with this special need, they’ll love them and be able to handle the easy, which they’ll probably have, or the hard, which is out there too.




8 Responses to “Hepatitis B: It’s an Easy Special Need…Except When It’s Not”

  1. Erin C. says:

    Can you share where the top five doctors are located or share the link as to where I can find it? We plan on adopting in the next year and were going to check hepatitis b as a SN we would consider. I’m curious how closely located these doctors are. Thanks for the informatitive post!

  2. Eileen says:

    There are certainly other doctors who treat kids with Hep B and some doctors can be mentored by one of the top docs if they need it. Rather than an infectious disease doctor, it’s a good idea to go to a pediatric gastroenterologist. Most kids don’t require the experts, but for the few that do, the Hep B Foundation lists these doctors:

    Dr. Rosenthal in San Francisco
    Dr. Murray in Seattle
    Dr. Jonas in Boston
    Dr. Narkowitz in Denver
    Dr. Schwarz in Baltimore

  3. Stefanie says:

    So well written, Eileen! Thank you for sharing all your wisdom and knowledge on this need.

  4. Amy W says:

    We are blessed to see Dr. Murray. My girly completed her 6 month treatment of interferon. We had the special prize box for those shot days (they never really got easy, there were always tears) We are scheduled for our 6 month post treatment blood draw. Last draw her viral loads were still very high, in other words treatment did not work. We are still hopeful that this month we will get good news. Dr. Murray says it is possible. Would I adopt a Hep B kid again? Absolutely. Is it easy? mostly Is it hard? sometimes very hard.

  5. Shecki says:

    Thank you for sharing this.

  6. Eileen says:

    Amy,

    Isn’t Dr. Murray awesome? We’re so lucky to have her here in the northwest! At the 6 month mark in treatment (my daughter did a year), we didn’t see anything happening either. As a matter of fact, her viral load had gone up (after having gone down at the beginning). It was so frustrating. We didn’t even check it again until the very end, and I was completely shocked that she was undetectable! It really can still work even after you’ve kind of given up hope on it!

    Blessings to you and your girl!
    Eileen

  7. Aus says:

    Eileen – great post!! We were open to hep B with our adoptions – and ended up falling for kids with different needs – it’s all good! But during that time I learned that our Cincinnati Childrens Hosp International Adoption Clinic had means to do “virtual consults” with a couple of the doc’s I think you listed (going by memory but Dr. Murry’s name “rings a bell” with me!).

    Suffice to say that any family considering hep B might want to check with their closest Children’s Hosp about consults like this as a part of their decision making process – or just live with the fact that they are going to fall for their child regardless and the need will be secondary anyway! ;)

    hugs – great stuff – aus and co.

  8. Rachel Cobb says:

    I am curious if I could ask you or another parent of a child with hepatitis B some questions? I am considering the file of a child with this diagnosis. Thanks :).

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