Monday, January 08, 2007

Raising an HIV-positive child: HIV and adoption part V

So what's it like having a child with this illness? I guess that one thing both parents and pediatric infectious disease specialists agree on is that on a day to day basis, it doesn't look any different than having any other child! HIV-positive kids are normally more concerned about their soccer team, going to prom, their friends, and other "normal kid stuff" than the fact that they have a disease. They take their medicine twice a day and very seldom have complications from the HIV. This is a quote from Erin's blog--Erin is an adoptive mom who brought home her little girl in November (the girl happens to have HIV):

"Our Pediatric Infectious Disease Specialist told us that most of the HIV kids he sees are NOT high needs...they take their meds twice a day and do great...St. Judes said the same thing, as did the parents of HIV kids that we spoke with."

Erin says that you don't have to do anything different in regards to bathing, feeding, dishes, laundry, hugs or kisses. The only special care should be taken when the child cuts him-/herself, when she says you should wear rubber gloves, use disposable items to clean it up, use bleach on hard surfaces, and wash any laundry with blood on it seperately. An HIV-positive child should also not share toothbrushes or razor blades with anyone else. (Erin said that the only instance of HIV being passed from one family member to another was when a razor was shared for shaving.)

Just with the medications available today, HIV-positive kids should live well into adulthood--and the medications are always getting better as further research is done. It would appear that the most important part of caring for an HIV-positive child is giving the meds consistently--at the same set times each day and definitely not missing any doses. (Becoming resistant to the drugs is the biggest threat to HIV-positive children.)

HIV-positive kids see their doctor either four times per year (quarterly) or just twice a year, (generally a specialist in infectious diseases) and take oral medication twice a day. Doctors say to expect your HIV-positive child to "thrive and be as healthy" as your other children. (Thank you Erin for all of your great info!!!)

Disclosure laws say that you are not required to report your child's HIV status. The health department will alert your child's school that there is an HIV-positive student, but will not reveal who it is. SO it's always up to the parent's discretion who to share this information with. I believe that dealing with blood issues at schools, daycares, dentist offices, etc. is pretty standardized now to protect both the care provider and the person being cared for, if either were to have HIV or any other disease spread through blood.

Other random information: I have read that a balanced, nutritious diet is important for children with immune system disorders. On an Ethiopian adoption message board, Emily posted about the adoption of HIV-positive children (she is a nurse for HIV-positive kids in Colorado) and said that HIV is considered easier to treat than type 1 diabetes. Insurance companies are also required to cover your HIV-positive child just like they'd cover any other child.

Personally I think the trickiest part of raising an HIV-positive child would be facing down the stigma and helping them navigate the emotional side of it (especially once they reached adolescence and it came to dating, for example.) Figuring out who to tell, finding out who your friends (and your child's friends) truly are, all those things coupled with the fear that something could happen to your child (which I suppose we have with any of our kids) seem pretty daunting. I will say that spending an entire afternoon with a bunch of HIV-positive children, I can easily see how easy it would be to "forget" that they had a very serious illness, being that they really are just like any other children. And as daunting or crazy as all of it may seem, God is ultimately in control and loves our kids more perfectly and fully than we even do.

Certainly all orphans need homes, not just children with special needs. BUT, the tragic thing is, without the readily available medications we have in the US, a child with HIV doesn't have much of a future. It's a sad reality. And an amazing miracle for each of these kids that joins a family here, because not only will they now have parents to love them and care for them, they'll have a future, more hope, they'll get to dream about what they want to be when they grow up.

No one should EVER enter into adoption lightly, or without first-hand researching the facts. I am all about that whole "knowledge is power" thing and as much as I'd love to see all the kids at AHOPE find homes ASAP I think it's just as important that adoptive parents know what to expect (our boys came to us from a disruption that did not seem particularly necessary.) If any of this has gotten anyone thinking more about the possibility of adopting one of these precious kids, definitely talk to a doctor who works with HIV-positive children, Adoption Advocates International, and parents of HIV-positive kids, to get the facts.

I'd also like to mention that if you adopt through Adoption Advocates, they have something called the Grace Fund available for the adoption of special needs children. Through the generous donations of others and fundraising they offer grants to families adopting kids that are more difficult to place. This includes HIV-positive children. I believe grants may be available through other organizations as well.

Here are some links to visit if you are interested in more information.

Erin's blog (adoptive mom with an HIV-positive daughter)
No More Counting the Cost blog (family in the process of adopting siblings, one is HIV-positive)
Chances By Choice (organization providing support for internationally born children with HIV/AIDS)
AHOPE (African HIV Orphans: Project Embrace)
WWO (Worldwide Orphans Foundation)
Adoption Advocates International (our adoption agency which also works to place HIV-positive children, as well as other special needs kids)


kristen borland said...

thanks for all the great info, brianna. it sounds like a truly amazing, rich, and scarey thing to adopt a child who happens to have hiv. i just heard about acres of hope (and acres of hope liberia) though samantha markwort's blog have you heard of this agency? so many children (and adults) in need all over the world.

hey, still waiting for the book! ;)

Brianna Heldt said...

I actually have the Acres of Hope book (written by Patty Anglin). She is wonderful.

Kevin has since begun reading the book and when he's done it's all yours! I'm really sorry!!!!!

kristen borland said...

no problem. i suppose kevin should have first dibs. ;) i'll just have to find another way to spend all my free time.

Jennifer Goodenough said...

I'm in the process of adopting a child from Haiti. The agency has a child in mind that has HIV. I am a missionary so I travel and I have some questions for anyone with experience or medical knowledge on the subject. My blog is

Molly said...

I just fell in love with this sweet 11 yo with HIV who is looking for a family. He actually said "what can I do to get a mama? Is she out there looking for me?"

Broke my heart. I'm not old enough to adopt, so I will just advocate for him, so thank youuuu for the links!


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