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.