Strollerderby

Pregnancy, Birth and HIV: The Good News

Posted by on May 3rd, 2009 at 11:02 am

I have two kids adopted as healthy newborns.  But shortly after my children came home, the agency that handled my adoptions began a new program for the placement of HIV+ babies and children.  When I have casually mentioned this program to friends and family I have encountered a surprising amount of confusion about HIV and children born with it.  It seems that much of the good news about HIV are in fact, little known facts.  After reading a nice feature in a Scottish newspaper about two women living through HIV+ pregnancies (both have negative children), I was inspired to share these facts with Strollerderby readers who might not have heard some of them.

Little Known Fact #1:

Few HIV+ women transmit the virus to their babies.

Our adoption agency identifies orphaned or relinquished babies and young children born HIV+ and matches them with adoptive families.  Most of these children are born abroad.  Why?  Because transmission of HIV between a positive woman and her baby is almost completely preventable with the right drug regimen and has almost vanished in countries with access to those drugs.

Little Known Fact #2:

Babies born “positive” often serio-convert to negative by the time they are a year old.  Even without the proper drugs, the odds of transmission between a woman and her baby are less than 50/50.  In the early days of HIV, doctors tested such babies and found them positive, as they were carrying their mothers’ antibodies.  But over 70% of these children “outgrew” their positive status, testing negative six or nine months (sometimes longer) after birth.  Families who adopt HIV+ babies may find that their children are negative after all, with later testing.

Little Known Fact #3:

HIV is no longer an automatic death sentence.  Even children who are truly HIV+ can be expected to live long, happy lives, even potentially having and raising biological (HIV-) children of their own.  Don’t get me wrong: HIV is not a simple thing to deal with.  It requires adherence to a drug regimen and regular doctor visits and testing to make sure that drug regimen is still the best one.  Depending on the overall health of the positive child, she may suffer more than her share of childhood illnesses and they may hit her harder than the average child.  But they may not.  Some people living with HIV have virtually indistinguishable basic health from those who are negative.

Little Known Fact #4:

HIV doesn’t live well (or for very long) outside the human body.  Once blood is dried, the risk of transmission is statistically zero.  In fact, researchers have had a difficult time keeping HIV alive outside carefully controlled conditions.  While wet blood spills need to be treated with care (generally, rubber glove and bleach are advised), a scab or some dried blood on a surface carry virtually no risk for transmission.  And people on a good drug regimen are able to keep what’s called their “viral load” so low that even wet blood has a small infection risk. (For more details, see the CDC website.)

With these things is mind, I urge you to support efforts to get antiretroviral drugs to those in countries with high rates of HIV but little drug access.  It is criminal that a single child should be born HIV+ when the drugs to prevent this are ready and available.

In the meantime, I’d humbly suggest that if you are considering adoption, to consider an HIV+ child.  One thing is certain when you adopt such a child: there is no long waiting list of parents available.  Many HIV+ children are what the UN calls “true orphans” with deceased parents and little social support in their home communities.  You are unlikely to run into a Madonna situation when you adopt an HIV+ child.  Instead, you can know that the child you bring home truly needs a new family.  I have met a number of families with a mix of positive and negative children, all thriving and growing happily.

There are also ways to support AIDS orphans who will never be adopted, or whose biological relatives are still in their lives but need help providing health care and other basics for these children.

HIV does not have to be a death sentence.  Children with HIV can have normal childhoods and long, healthy lives.  The more people understand this good news, the better off these children will be.

image: child awaiting adoption; adoption-link.org

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10 Comments

Off the top of my head, Genevieve, I think it’s federal. I’m not the one who handles the coverage in our family. I’ll ask my partner and if there’s a different answer, I’ll come back and let you know.

Shannon LC Cate commented on Jan 01 70 at 12:00 am

Thank you shanon and lulu for providing such great info. I was aware of the advances in treatment for adults – but was not aware of negative children being born to possitive moms.

The insurance coverage piece is such an imporant one – financial harship can add so much to the emotional exhaustion already so much a part of loving a child with a chronic illness. Do you now is the insurance coverage law federal or state?

Anonymous commented on Jan 01 70 at 12:00 am

This is a wonderful post. I’m glad you’re spreading the good word.

Anonymous commented on Jan 01 70 at 12:00 am

She’s not mine, Sue. She’s waiting for you in Haiti!

Shannon LC Cate commented on Jan 01 70 at 12:00 am

Thanks for adding more info, ya’ll!

Shannon LC Cate commented on Jan 01 70 at 12:00 am

Preach it, girl! I’m so glad to see this being discussed. Is that a photo one of your darling girlies?

Anonymous commented on Jan 01 70 at 12:00 am

Massachusetts provides MassHealth — the state insurance program for folks with low incomes and/or a disability — to children who are HIV+ (there is a list of disabilities and diagnoses for which they provide MassHealth up to age 22 regardless of level of independence or health). Even for families with insurance through their job or whatnot, things like copays for visits and meds add up. MassHealth copays are generally between nothing and $3 for office visits and meds, so it really helps.

Anonymous commented on Jan 01 70 at 12:00 am

Thanks, Shannon, for spreading the good news about the great gains made in reducing vertical HIV transmission from mother to child. Can I tweak #2, though, just for clarity?

Children who are truly HIV+ cannot “outgrow” their HIV+ status. Once infected, they are infected for life or until we find a way to kill the virus. The confusion about “outgrowing HIV infection” stems from the testing issue you mentioned – all children born to HIV+ mothers will *test* HIV+ via HIV antibody tests, due to the presence of their mother’s antibodies. A standard HIV antibody test cannot be considered accurate in children under 18 months of age for this reason.

That’s why DNA PCR testing is considered the gold standard in diagnosing infant HIV infection. Where available, DNA PCR testing will accurately diagnose HIV infection by the time a baby is 6 months old. For countries where DNA PCR testing in not available and antibody testing must be used to diagnose pediactric HIV infection, children are considered reliably diagnosed if they have a positive HIV antibody test (ELISA + confirmatory Western Blot) after they are 18 months old.

So yeah: If you’re adopting a child older than 18 months, you should be knowing for sure if s/he’s HIV+… in which case you hook up with the best pediatric HIV specialist available in your area, and you get on with your lives. Pediatric HIV disease isn’t any more fun that adult HIV disease, but the treatments available nowadays are certainly better than they were 20 years ago. In Chicago there’s a whole cadre of young adults in their 20s who have been living with HIV since birth, and they don’t intend to keel over anytime soon.

For those who want more information on children living with HIV/AIDS, check out AVERT: http://www.avert.org/children.htm

Project Inform is also a great resource for HIV+ people and their family/friends. I believe the interactive map on the website can help you locate HIV specialist care and other resources in your state – if not, anyone can contact PI for personal Q&A and referrals. http://www.projectinform.org/

Thanks again, Shannon!

Anonymous commented on Jan 01 70 at 12:00 am

Karen,
Great question–I should have addressed that above. YES, these kids are covered by their parents’ insurance. It is not legal not to cover “existing” conditions in adopted children (a recent law). Insurance companies treat them like babies born to parents.

Shannon LC Cate commented on Jan 01 70 at 12:00 am

Would parents’ health insurance companies cover an adopted HIV+ child’s health care, especially the drug regimen?

Anonymous commented on Jan 01 70 at 12:00 am

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