Before I dive into this round of questions, let me be clear that disclosure is a personal family decision. I'll answer these questions for us, but other families I know and love have chosen a different way.
Question: We are adopting a child that has Hepatitis B and there are some similarities between HepB and HIV. The biggest piece of advice we've been given by doctors and other HepB parents is to not disclose our child's condition with others in our day-to-day lives (excluding immediate family). This has been a struggle because we are usually such an open book and our friends/family all know we are doing a special-need adoption and we are repeatedly asked what the special need is. I'm just curious what made you and your husband decide to share this? Not condemning your choice at all! We are not at all ashamed or embarrassed by our daughter's illness, but we are also passionate about protecting her privacy so she does not suffer discrimination or prejudice because we decided to make it public. Can you explain your reasoning for choosing otherwise? Thanks and God bless!!!
From a family adopting a positive child: We have only disclosed to our family because we feel it is her story to tell. We don't want to make that decision for her. Did you disclose? How was it received? Thank you for your wisdom!!!
The privacy vs. advocacy dilemma is a hard one for any parenting topic: how do we help make the world a safe place for our children to live unashamed while respecting their privacy to share their stories when and where and to what extent they decide?
I don't think there's one universally right answer, except PROCEED WITH CAUTION.
For us, that means only publicly sharing that one of our children is HIV+. A few close friends know, but it's not common knowledge beyond that. Most people who adopt a positive child, though, don't have the option we did of only partially disclosing. It was only because we adopted three siblings at once, with only one having HIV (which, side note, fits the stats pretty well - for a woman with untreated HIV, there's a 25-30% chance that she'll pass HIV on to her child in pregnancy), and I'm not sure what we would have done about disclosure had we only been adopting one positive child.
As far as medical professionals go, we've gotten different advice from different nurses, doctors, and specialists. To me, what it comes down to is this: disclosure isn't a medical decision; it's a parenting decision. When the medical professionals we work with for our children's health or for my health offer research-driven, medically-proven direction, we follow it. When they offer opinions about how my husband and I ought to parent our children, we consider their advice but certainly don't feel bound to it in the same way we treat their dosing instructions for prescriptions.
For us, we've seen three great benefits to disclosure (once again, for OUR family, whereas I know many non-disclosing families who could offer a similar list of benefits they've observed from NOT disclosing):
- We are able to educate others, in hopes that the world might be a little less ignorant once our child is gaining independence. We have experienced rejection, and some of those who rejected us and our child have changed their minds and hearts since. (Oh, and if you only knew the rejoicing when we found out!) That's huge, y'all. Furthermore, we have dozens upon dozens of other friends who didn't reject us but instead came to us with questions and concerns so they could be comfortable, plus two friends who have begun the adoption process are planning to add an HIV+ child to their family because they've seen how it works for us. Once again, HUGE.
- We haven't shouldered our children with secrecy. I can't share all the specifics of how we know this directly and deeply, but our experience and research tells us that secrecy usually shrouds unpleasant and even criminal situations, such as abuse or untreated addictions. Given our past observations - professionally and personally - of secrecy in childhood, we didn't personally feel comfortable encouraging secrecy. Also? Our kids are oversharers (hmm, I wonder where they get that from...) and young, so the concept of privacy can be hard to grasp at their age, whereas it would be perfectly appropriate for other ages. For now with their ages and personalities, "don't talk about HIV" would be heard as "TELL EVERYONE YOU KNOW ABOUT HIV!" (Side note: for us, not telling our children about HIV wasn't an option, because the topic had already been discussed in detail with our newest three, who in turn talked about it in detail to our first three, so while some parents can just say, "Little Johnny takes medicine," without explaining why, that wasn't an available choice for us.
- We have shielded our child from feeling rejection from someone who doesn't know and then finds out and then doesn't let their child play with ours anymore. Sadly, when that happened in one friendship, I couldn't shield Jocelyn and Robbie from asking why we didn't play with _________ anymore, but I also didn't tell them the reason out of hope of restoring that relationship in time. For our newest three, we didn't want them to start to build an attachment with someone new only to have that stripped away like so many previous attachments in their tender lives. HIV discrimination against children feels like a 'punch in the gut' for parents.
I know I've said this already, but it's worth mentioning again: This is the RIGHT decision for OUR family, whereas non-disclosure is the right choice for others. Please don't feel like this is the only valid path for those of us parenting children with HIV or other blood-borne pathogens. It's like breastfeeding vs. formula, cloth diapers vs. disposable, and so on... to each his or her own.
