By: Emma Carter
Updated: Aug. 2, 2016
Originally Published: Oct. 19, 2014
My child, who is HIV-positive, is spending time with your child, and you might not even be aware. She has shared playdates with your little one at a nearby private preschool, joined them during swim lessons, and even stood behind them in line at gymnastics class. Due to legal protections surrounding her HIV status, we are not obligated to disclose this information to schools, camps, or even fellow parents—only to healthcare providers.
The stigma and misinformation surrounding HIV have led to significant advocacy for the right to keep this information private. Our pre-adoption social worker advised us, “Keep it to yourselves. There’s so much misunderstanding out there. Your child already stands out being Chinese; do you want to give others another reason to exclude her?”
Recently, during kindergarten, my daughter attempted to share her truth with your child. “Lucy, guess what? I have a dragon in my blood! I was born with it, and my birth mother in China had it too. When I take my medicine, the dragon stays asleep.” Lucy and several other kids didn’t understand and one even exclaimed, “Well, I was born in China, and I have a dragon, too!” It seems he wanted to relate. I reassured my daughter that their lack of understanding wasn’t her fault.
Why don’t we need to disclose this information to schools or playgroups? Because HIV has never been transmitted in these environments. Advances in medication have rendered the virus inactive. Every four months, my child’s blood is tested, and each time the results show no virus present. She is thriving, full of joy and laughter. I care for her scrapes, wipe her nose, and share food and affection—all without any risk of HIV transmission.
She simply happened to be born with the virus. If her birth mother had access to crucial antiretroviral medications during pregnancy, my daughter might have been born HIV-free. Interestingly, those life-saving medications are provided at no cost in China, funded by the government. However, many individuals there avoid treatment because disclosing an HIV-positive status often leads to social ostracism.
In the future, my daughter might date your son, marry, and have children who are HIV-negative—if that’s what she desires. Fellow parents, please understand that HIV should not be a source of fear. I encourage you to research and consult resources like Mount Sinai’s infertility resources or explore this informative post on our site. You can also find expert insights at Intracervical Insemination. Knowledge is power, and it’s essential to understand the realities of HIV. Remember, my child with HIV is playing alongside yours, and you may not even know who she is—and that’s completely fine.
HIV itself is not frightening, but the ignorance and stigma surrounding it are.