A topic came up on this week’s Creating a Family show on Adopting and Raising a Child with HIV that I hadn’t given much thought to before: who do you tell that your adopted child has HIV? Unfortunately, stigma against people with HIV is alive and well. You and your child risk rejection, fear, and being ostracized if you tell, but whom do you have an obligation to tell? We talked about all of this and more on the Creating a Family show this week.
Degrees of Risk
Fortunately, HIV is hard to catch unless you are exposed to the infected person’s blood. The average friend, extended family member, or acquaintance has virtually no risk, so no need to know that your child has HIV.
Should you tell your child’s teacher? You can’t get HIV from contact with vomit, stool, urine or mucus (otherwise known in our house as barf, poop, pee, or snot). All school personnel are trained to use universal precautions when dealing with blood, so Traci Heim, with Project Hopeful, suggested that it wouldn’t be necessary to tell school personnel, unless required by your state, and most states don’t have this requirement. While I see her point, it makes me uncomfortable. In the real world of classrooms, there is a difference between generally following universal blood precautions and being extremely careful with following the precautions. The problem is that while not all teachers would treat your child differently if they know her HIV status, some would, but once you tell one teacher the chances are very good that all teachers would find out.
Whether to tell caregivers is a different matter in my mind. Traci pointed out that caregivers have refused to care for children with HIV; however, I think their degree of risk when caring so intimately with the child earns them the right to know. Even if trained to use universal precautions, in the midst of caring for young children it is easy to be exposed to blood while stopping the nosebleed or tending to the boo-boo. I do agree with all the guests on our show that each situation has to be viewed separately.
Where to Go for Help in Deciding
When deciding how to approach who to tell that your child has HIV and how to strike the privacy vs. secrecy balance, the good news is that there are some terrific organizations to help you.
- PositivelyOrphaned.org
- Yahoo HIV Adoption Group
- Positively Adopted
- Rainbow Kids (good info on HIV)
Who would you tell? How do you think your family and friends would react?
P.S. Our guest on this Creating a Family show on Adopting and Raising a Child with HIV were Dr. Jan Piatt, Medical Director at the Bill Holt Pediatric HIV Clinic at Phoenix Children’s Hospital; Kate Foley, Social Worker and Associate Director of Outreach at Spence-Chapin Adoption Agency; and Traci Heim a Director for Project HOPEFUL, a nonprofit bringing education and encouragement for those adopting children with HIV. She is also a parent to 10 children through adoption, including a child with HIV.
Image credit: Positively Adopted
Nothing meaningful to contribute on the topic but the children pictured are absolutely exquisitely beautiful. I doubt they can go in public without being stopped and told how pretty they are every 20 feet.
The guest experts were fairly clear, but you had the last word and it cast an impression. You seemed to support a babysitter casting out a child living with HIV. That was pure discrimination based on a total lack of education, but you supported it in the moment (as you seem to have done again in your blogpost). And that was how the radio show ended.
How, frankly, horrible — and unfair — for the child with HIV in that situation.
Ryan White comes to mind. Have we really learned nothing since Ryan White?
The babysitter in question was uncomfortable caring for a child with HIV. While educating her is appropriate, I’m not sure that would be who I would want caring for my child, and I would assume I’d be glad to know in advance, thus telling her would be useful. I would also assume that I would want someone caring that physically for my child (as in a caregiver, full time babysitter, etc.) to know about the medications and help me be on the look out for any changes or reactions. Perhaps not. Truthfully, I don’t exactly know where I’d draw the line on who to tell vs. who not to tell. I would draw it differently now after the show and reading these comments, and for that I am grateful. Thank you.
Dawn, you are perpetuating misinformation and feeding stigma that harms children and adults living with HIV. Shame on you. I listened to your program and am still ticked off days later.
Unless a teacher or childcare worker is planning to have sex — or shoot up — with a child in his/her care, there is really no risk of transmission.
To encourage disclosure based on fear and ignorance is irresponsible. Adopted children living with HIV deserve far, far better.
To add to what Brian has said, the overall risk of HIV infection after percutaneous exposure to HIV-infected material in a health care setting is 0.3%. And this stat is from the late 1990s so, really, during pre-ARV days prior to when many people living with HIV were undetectable, which means that it is almost impossible to transmit. Yes, even in instances of needlesticks during the pre-ARV era it was almost impossible to get HIV.
Please educate yourself and do a follow-up blogpost — heck, even a part two of the radio show — that includes accurate information about HIV transmission. I certainly can’t recommend — or post a link to — the existing radio show as it is.
AnonAP#2, my opinion is shifting based on the comments we’ve received on this blog. I thought the guest experts on the show were very clear about the risk of transmission on the show. In fact, I can’t imagine anyone coming away after listening to them on the show and feeling that they were unclear as to transmission risk. My blog is separate from the show, and one of the beauties of blogging is that most people read the comments, including yours, and can form their opinions based on the information shared.
I have thought a lot about this and about adopting a child with HIV. I guess where I feel some concern regarding disclosure is that not telling seems to rest on the presumption that it is statistically very unlikely to come in contact with the bodily fluids of the children one is working with, much less have the perfect conditions present to contract HIV and that precautions should be followed universally. But the person breaking those precautions would, I assume, be doing so out of love/care for the child, a desire to quickly meet their needs. I am uncomfortable with the concept of me as a potential parent deciding what is an acceptable risk for another person in that situation. That said, the discrimination that would be an even greater statistical likelihood for the innocent child with HIV. Such a tough decision. Please tell me if you feel like I’m missing something.
TornadoMama, I think you hit the nail on the head from my perspective. I have found the discussion in the comments to this blog very instructive to the way I’m viewing this.
We do not disclose. As for school, dept of health lets them know that there is a student but not which student. This is why they have universal precautions. I tell on a need to know basis. I found ignorance comes from the most unexpected places. My kids are awesome. I don’t want people to see HIV I want them to see my awesome kids.
I love the idea of the health department letting the school know without identifying the student! Do you tell babysitters or other caregivers?
Thanks Alyssa. We get a lot of questions from families who are considering adopting a child with HIV, so my guess is that many more people are now open to this options. Shows like the one we just did, and the wonderful work by all the great organizations mentioned are helping make this shift in attitude.
Great article and comments. I’d be open to adopting a child an HIV positive child. This was a great read. Thanks for posting.
Just from working at a daycare, I know that universal precautions sometimes are not followed. Maybe someone is new, or the gloves are inside, and the child is small and needs help. I understand universal precautions should be followed, but sometimes, daycares and schools make that difficult. The gloves are inside the building, and not within reach when the children are outside. I feel like most places assume someone won’t have HIV, so the “universal precautions” are difficult to follow through on.
That being said, I always followed them.
But having this experience made me wonder what I would do. My husband & I are looking into the possibility of adopting an HIV positive child, so this is something that has crossed my mind. While I don’t want my child to be singled out, or treated differently, I would worry about not informing the care-givers of my child. It would feel irresponsible.
As for how our families would act? I believe they might have some questions, but after we educated them, they would be onboard.
Jennifer, I too have been thinking about what I would do. I think I’d feel much like you do.
Dawn, on some level your own reaction is instructive. You know that in a classroom teachers and other students do not come into contact with bodily fluids that transmit HIV. You know that universal precautions have become standard. But you still have a lingering fear about HIV. The stigmatization of HIV is just as debilitating, if not more so, than the actual disease.
Brian, while I don’t disagree with you that the lingering fear of HIV is debilitating, I disagree that teachers don’t come in contact with bodily fluids. They do. All the time. Caregivers do also. The only bodily fluid of significant concern is blood, but both teachers and caregivers routinely are faced with situations involving blood. Universal precautions have become standard, but I’ve seen them violated. In fact, I have violated them on occasion in my attempt to quickly help a child with a bloody nose or skinned knee. I’ve taught youth every Sunday for the past 16 years at church, and I don’t even know if gloves are available, and I certainly don’t know where they are kept.
I am not saying that I would tell everyone, in fact, I know that I would not. I’m not sure exactly who I would tell, and I think I’m not alone. I’m learning as I go and this discussion is helping me to think through what I might do.
‘kay so…gotta chide you a little, Dawn. Find those gloves. If they aren’t there, acquire those gloves. Stick a pair in your pocket for easy access when you get there. The fact of the matter is that you do not know the medical status of any of the kids you’re teaching, and of course, the kids and their parents may not either. I had a college friend who contracted hepatitis from a transfusion as a child but didn’t know it until she donated blood years later and got a very strict letter from the Red Cross about donating with a positive Hep status. Of course the risk of that happening are slim, but they are real. Building the culture of safety there might have to start with you, but you can do it!
Anon AP, really really good point. And your point is well taken. HIV is far from the only blood borne disease.
Anon AP, I love your point that many people do not know their HIV status and therefore universal precautions should be taken by everybody.
I’ll also make 2 other quick points before I shut up. First, per the CDC, there have only been 57 documented cases of HIV transmitted from patients to health care workers thru December 2001, and none since 1999. http://www.cdc.gov/hiv/resources/factsheets/hcwprev.htm There have not been any reported cases of HIV transmission in school settings. The question becomes balancing the theoretical possibility of HIV transmission against the very real risk of discrimination against the child by teachers and other students.
Second, these purported need for these disclosures shifts the burden of HIV prevention from the uninfected to the infected. Everyone should take steps in their lives to reduce exposure to HIV — and any other disease — we shouldn’t place all the blame on people with HIV.
Brian, wow, those statistics are powerful! Thank you so much for sharing them. You’ve given me much to think about.