Advice from Parents of Kids Who Have HIV

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We recently asked parents of kids who have HIV a few questions:

  • What is something you wish you knew prior to adopting a child with HIV?
  • What were some helpful resources as you have learned to support your child? And,
  • How did/do you navigate disclosure?

This is what they said:

On considering adopting a child with HIV, a parent shared:

“I wish I had known what a big deal HIV isn’t! Obviously, it’s important, and we take our daughter’s care seriously, but she is so healthy. Her more serious issues are trauma-based. That’s a lot harder than taking a pill once a day and visiting a doctor a few times a year.”

On the challenge of the stigma surrounding HIV, a parent shared:

“On the flip side of realizing how what a big deal it isn’t, don’t underestimate the stigma that still exists. We do not disclose, but we carelessly let it slip early in the process to someone we trusted. That one slip resulted in an anonymous letter to the pre-school board about not allowing our son to attend for the safety of other students. Thankfully the board disregarded it, but it was definitely a wake-up call on why there are good reasons to not disclose.”

On navigating disclosure, a parent shared:

“Deciding whether to disclose or not has been the biggest obstacle we have faced. Stigma is still very real (even in the healthcare system). I would recommend for potential adoptive families to decide as a family beforehand whether you will share your child’s medical info with others (or with whom) before you adopt them.”

And on understanding the full picture, a parent shared:

“This goes beyond HIV but consider carefully about how much of your child’s personal history you share with others before and during the adoption because it is their history and situation. Eventually they go from being your cute child to their own person, and their HIV status among other personal things about their life are things that they should know first and be able to decide how and if they want to share with others. Also, as much as we want to downplay the daily effects of HIV, there are some big effects of a highly stigmatized illness for which they have to take meds, go to the doctor and get blood work 3-4 times a year. [This illness] is specifically identified as a sexually transmitted illness, even if that’s not how they acquired it… Yes, all the infection control considerations in the family aren’t the big deal you think of before but there are other big issues outside of our little family bubbles. And when you add HIV to trauma and trauma-based behaviors, there can be another layer of challenges in all of that, especially as they become older.”

In other words, on average, parents are surprised to learn how manageable an HIV infection is with proper treatment but a lack of education about HIV means that fear and stigma remain significant challenges, and that makes the issue of disclosure very important for families with loved ones who have HIV.

While everybody’s experience will be different, if you’re considering adopting a child with HIV, we hope you’ll find their advice helpful to having an informed discussion and making the right decision for your family!

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*Please consult your medical provider for more information and specific local resources in your area.