I have a story to tell, after a trip to Johns Hopkins hospital yesterday, but I want to start at the beginning. When we chose the country of Liberia to adopt from back in 2006, we were fully aware that they didn't test the children for anything before completing their adoptions. It sounds ridiculous now, but I only had over-all healthy children and I just kind of assumed that the little girl we brought home would be the same. Once we arrived in Liberia in August of 2006 for Victoria, she was obviously very sick. We checked her into a hospital in Monrovia and they diagnosed her with Malaria and treated her via IV for a few days. Once we arrived home, we chose a pediatrician that was quite a drive, but specialized in internationally adopted children. She ran several blood tests and caught the fact that Tori had not really fought off the Malaria. We treated her once more in the U.S. and the Malaria has never been an issue again.
Other than the Malaria, one day the doctor called me and told me that she had bad news. She told me that Tori was positive for Hepatitis B. Since I virtually knew nothing about it, we had to learn quickly what it was and how to proceed caring for her. The reality is that Hep B is an incredibly minimal risk to anyone other than the person carrying it; in her case, she was born with the virus. Hepatitis doesn't live outside the body, therefore, in normal family situations the risk is inconsequential. Our concern was for our daughter; how serious her case was and what did we need to do for her.
Unfortunately, before we could even research our options for Tori's care, it leaked out at my homeschool group. While we weren't keeping the information a secret, neither were we shouting it from the roof-tops. Apparently one mom that I told felt the need to tell another mom, who told another mom, you get the idea. The end result confronting us was a mother who had never immunized her children and was furious that we allowed our daughter in the group setting. I would like to interject at this point that I have no issue with people who chose to not immunize nor do I have an issue with those who do. I think it is a personal opinion, but the fact that this particular mom thought that my child was the ONLY child in the county that was a carrier for a diagnosed disease remains incredibly naive. Although she immediately quit the group (and immunized her children since we still resided in the county), her husband still felt the need to approach JD at work and actually accused us of endangering the entire county! You have to realize that we were blind-sided with these attacks, because we were just trying to digest the information on our own level and figure out how to proceed caring for our new daughter.
We learned quickly that often people only view situations from the stand-point of what is best for them; we also learned quickly who our true friends were - they began falling along two sides very quickly. Often when I relate this to other parents of Hep B children, they are shocked because they never were subjected to what we went through. We ended up seeing a "liver doctor" outside of D.C. who followed Tori's liver levels with frequent blood tests. Within months, he ordered a liver biopsy. The liver biopsy showed significant liver scarring and we knew that she would need to have some kind of treatment in order for her liver to continue functioning for her life time.
The liver doctor in D.C. ended up referred us to Johns Hopkins. Fortunately, we live within driving distance of the renowned hospital, as it has one of, if not the best, pediatric Hep B centers in America. We have worked with a doctor that is personally renowned in research and treatment options. The difficult thing with Hep B is that it is a very personal disease. Some people respond great to some treatments, others the treatment doesn't work at all. Some people have horrible side-effects, others barely notice a difference. The decision wasn't difficult to chose to fight it as aggressively as possible, since any chance of a medical cure is usually before a child is 4 or 5. We agreed to start a six month interferon regimen. The worse part is that interferon involved shots three times a week administered by us. Even worse for me was that the starting date was right when JD got called on a serious work assignment to HI for six weeks and I had to go it alone.
To be continued tomorrow -
So worth telling. Looking forward to part 2. And if it's not hep B, it's that they were a foster child, or loss and grief behavior, or race, whether people realize it or not...ReplyDelete
It's unfortunate that the mother over reacted. If she had chosen to avoid vaccinations from and educated position she would have known how Hept B is spread and that there was no cause for concern. I'm sorry for that lack of support, ignorance and understanding. I'm looking forward to reading the rest of the story.ReplyDelete
Oh wow. I can't wait to hear the rest of the story.ReplyDelete
Thank you for sharing this. You are very right. It is a story to be told. People always fear what they don't know. We had the same thing happen when we found out our son had a latent form of TB and none of the other moms wanted him to play with their kids because they didn't understand it :-( We had to take lots of time to educate other people about it, but that's all they needed- educating. Keep fighting the good fight! Blessings-ReplyDelete