In 2009, our amazing daughter joined our family. She is a star athlete and a great student ... and she has Hepatitis B. In no way does this diagnosis define her or slow her down.
It really helped me to know that most children with Hepatitis B grow up to lead normal, healthy, active adult lives. In addition, the availability of a vaccine gave me peace of mind. Our family was vaccinated and had our titers checked to ensure we were immune.
Truly, our experience with a child who has Hepatitis B has been so easy. If I had to choose something that was most difficult, it would be deciding who needed to be informed of her Hep B-positive status. Many states in the US have required school children to be vaccinated against Hep B for 15-20 years, but the parents of her friends may not have had the vaccine. Because of this we have made it a family-wide practice to use universal precautions when blood is present. Because Hepatitis B is not common in the US, there are some misconceptions about the disease and how it is transmitted. So each family has to evaluate with whom they want to share this information.
I wish I had known how little this special need affects our daily life. Honestly, in between her blood draws every 6 months, we hardly even think about it. We are fortunate that the local Children's Hospital has a pediatric gastroenterologist who specializes in children with hepatitis. Currently our daughter is in the immune tolerant phase - her body doesn't recognize the virus as a foreign entity. She has blood tests every 6 months to monitor her liver health. Every 2 years, she has a liver ultrasound (a painless procedure). At some point, her body may decide to fight the virus - if so, her doctors will monitor her liver health more closely and may decide to treat her with medication or other protocols. For those who fear taking kids for blood draws: our pediatrician provided a prescription of topical lidocaine that we put on her elbows before the blood draw, so she doesn't even feel it. We do something special after the blood draws, so she thinks this is great. One day last summer, she asked me if she could go have a blood test. "Why?" I asked. "Because I really want to go the Six Flags amusement park as my treat" she replied. So clearly, the blood test is a non-issue for her!
The medical community is actively looking for a cure for Hepatitis B. There are several studies underway at the moment that may have promise to help children in the immune-tolerant phase get rid of the virus. Let's hope the study results are positive!