some more resources about HIV, adoption, and disclosure

sources for HIV facts I've shared in previous posts

Note: many links have changed since I originally posted this. I've updated links below with web archived links, but I will be replacing them with live links as soon as I can. All of the information below, even via archived links, is still current and medically proven.

From the New Mexico Department of Health:

Whilst HIV may live for a short while outside of the body, HIV transmission has not been reported as a result of contact with spillages or small traces of blood, semen or other bodily fluids. This is partly because HIV dies quite quickly once exposed to the air, and also because spilled fluids would have to get into a person's bloodstream to infect them.

From UNAIDS, the Joint United Nations Programme on HIV/AIDS, on how HIV is transmitted:

1. Unprotected sex (vaginal, anal and to a lesser extent oral sex) with an infected person
    
2. Sharing contaminated syringes, needles or other sharp instruments
    
3. From mother to child during pregnancy, childbirth or breast feeding when the mother is already HIV positive
    
4. Blood transfusion with contaminated blood

From UNAIDS on how HIV is not transmitted:

HIV is not transmitted through non-sexual day-to-day contact. You cannot be infected by shaking someone’s hand, by hugging someone, by using the same toilet or by drinking from the same glass as a person living with HIV. HIV is not transmitted through coughing or sneezing like some other diseases. There is no need to fear social interaction with people living with HIV.

From the CDC, on ways you don't get HIV:

You don't get HIV from the air, food, water, insects, animals, dishes, knives, forks, spoons, toilet seats, or anything else that doesn't involve blood, semen, vaginal fluids, or breast milk. You don't get HIV from feces, nasal fluid, saliva, sweat, tears, urine, or vomit, unless these have blood mixed in them. You can help people with HIV eat, dress, even bathe, without becoming infected yourself... You do get other germs from many of the things listed above, so do use common sense.

From the CDC, on children with HIV/AIDS:

Infants and children with HIV infection or AIDS need the same things as other children -- lots of love and affection. Small children need to be held, played with, kissed, hugged, fed, and rocked to sleep. As they grow, they need to play, have friends, and go to school, just like other kids. Kids with HIV are still kids, and need to be treated like any other kids in the family.

From the CDC, on playing sports with HIV:

There are no documented cases of HIV being transmitted during participation in sports.  

From the National Institutes of Health, on HIV/AIDS policies in the NFL:

Transmission of HIV infection is likely to be rare in the NFL. This is supported by the fact that in over 10 yr of the AIDS epidemic, the CDC has not attributed one AIDS case to athletic competition... Based on these facts, a player with HIV infection poses virtually no threat to others or himself by further athletic participation in the NFL.

From UNAIDS on HIV+ women having HIV- babies:

In most high income countries the rate of transmission of HIV to babies has been reduced to less than 1% by using a range of medicine and good care for the mother during pregnancy. HIV positive women wanting to get pregnant are advised to do so in consultation with the health care provider to reduce the likelihood of their baby becoming infected.

From AIDS.gov, on HIV medications which have changed outcomes for HIV+ individuals:

In 1987, a drug called AZT became the first approved treatment for HIV disease. Since then, approximately 30 drugs have been approved to treat people living with HIV/AIDS, and more are under development.

From AIDS.gov, on the question, "Can I have children if I am HIV+?"

Yes. If you want to be a parent, having HIV shouldn’t stop you. There are several options for HIV-positive women and men who want to be parents.
[Note from Shannon: more options exist than are presented in this article, and I expect that medical advances will offer even more options by the time our children are adults.]

From University of California - San Fransisco, on a new treatment that can allow couples in which one partner is HIV+ and the other is HIV- to conceive a child the old fashioned way with minimal risk of transmission:

Deborah Cohan, MD, MPH, a UCSF obstetrician and gynecologist who specializes in the care of pregnant women with HIV, has been evaluating the use of Truvada in pregnant women in the U.S. who are uninfected, but whose male partners have HIV... Among heterosexual couples, if HIV levels in the HIV-positive partner remain suppressed with antiviral therapy, the risk of HIV transmission to the uninfected partner appears to be especially small, Cohan said. “It’s officially not zero, because we know of at least one case report,” she said. [The rest of the article, and other research, indicates that the risk is expected to be even lower with Truvada treatment for the uninfected partner, though not enough research has been completed to confirm that yet.]

From the PARTNER study, a large multi-year research project on HIV transmission via sexual activity when one partner is negative and the other partner is HIV+:

When asked what the study tells us about the chance of someone with an undetectable viral load transmitting HIV, presenter Alison Rodger said: "Our best estimate is it's zero."

From The Stigma Project, an infographic of the mid-study findings of the PARTNER study research:

From the National Institutes of Health, in an article by the Research Department of Infection and Population Health in London, on the life-expectancy of people with HIV who are being treated:

With timely diagnosis, access to a variety of current drugs and good lifelong adherence, people with recently acquired infections can expect to have a life expectancy which is nearly the same as that of HIV-negative individuals.

From the NC Bar Association, on the question, "Is HIV status confidential?"

Yes. North Carolina law makes it a misdemeanor to disclose information about HIV infection. However, there are a few exceptions. First, information about your HIV status can be disclosed with your consent. Also, as discussed above, your doctor has to report your HIV infection to the State. The State can inform your spouse.

From the NC Bar Association, on the question, "Do I have to tell the school or daycare if my child has HIV?"

No. You do not have to tell your child’s school or day care provider about your child’s HIV infection. However, if your child has special medical needs, you may choose to disclose in order to make sure those needs are met. Your child cannot be discriminated against in school or day care because of HIV.

From the National Institutes of Health, on the differences in treatment and outcomes for HIV+ individuals in the 1980s vs. today:

In the early 1980s when the HIV/AIDS epidemic began, people with AIDS were not likely to live longer than a few years.

Today, there are 31 antiretroviral drugs (ARVs) approved by the Food and Drug Administration to treat HIV infection. These treatments do not cure people of HIV or AIDS. Rather, they suppress the virus, even to undetectable levels, but they do not completely eliminate HIV from the body. By suppressing the amount of virus in the body, people infected with HIV can now lead longer and healthier lives. However, they can still transmit the virus and must continuously take antiretroviral drugs in order to maintain their health quality.

From the National Institutes of Health, on outcomes for children with HIV in Africa:

More than 95 percent of all HIV-infected people now live in developing countries, which have also suffered 95 percent of all deaths from AIDS. In those countries with the highest prevalence, UNAIDS predicts that, between 2000 and 2020, 68 million people will die prematurely as a result of AIDS. In seven sub-Saharan African countries, mortality due to HIV/AIDS in children under age five has increased by 20 to 40 percent.

From the CDC, on HIV transmission in household settings:

• This report details the only documented cases of HIV infection within a family in a household setting. In each case, transmission was not in a typical household setting and no precautions were taken to prevent infection. In one, a mother with open sores left them un-bandaged and then picked at her son's scabs, and he contracted the virus that way. (Side note: ICK!) In the second case, a mother provided unhygienic and unskilled nursing care to her adult son who had AIDS and, in failing to wear gloves in transmission-risky situations, contracted the virus. One other documented transmission case was when two adolescent boys who had hemophilia shared razors, and as both cut themselves, the blood of the one with HIV infected the blood of the one without it. In another case, a mom with two sons with hemophilia used the same needle to infuse both sons, which led to the HIV infection of the previously uninfected one. In three other instances, a caregiver failed to use proper precautions, like gloves and/or bandages, when providing care to relatives with bleeding issues or sores in addition to HIV. All of these cases date back 20 years, and I haven't found records of any more recent cases being reported in household settings.
• This is why I and other HIV adoption advocates correctly state "HIV has never been transmitted in typical household settings." It has been transmitted in the home... but with the good hygiene practices most families without HIV use (aka common sense), it isn't. 

adoption stories

Project Hopeful: I slept with a girl… and I didn’t catch HIV

But then I realized, that if I KNOW the facts, and 1987 still crept in to my mind for a split second, how would my friends react in the same situation? How would I have reacted a couple of years ago?

Parenting magazine: An HIV Adoption Story

The fact is, science and medicine have come so far that "we would rather treat pediatric HIV than juvenile diabetes," says Kenneth Alexander, M.D., chief of pediatric infectious diseases at the University of Chicago. "If you look at how well our medications work, there's no reason not to expect that Sachi will one day see her grandchildren."

People magazine: Enough Love to Go Around

Carolyn Twietmeyer lay in an Addis Ababa hospital bed in July 2008, holding 11-year-old Selah, who had been her daughter for only a few weeks. Swatting biting insects that swarmed through the window, she listened as doctors said there was little hope for her child: Selah had AIDS, weighed a mere 32 lbs., and had long been denied blood transfusions due to limited supply. With Carolyn's blood now pumping through the girl's body, she prayed Selah would be well enough to board a plane to the Twietmeyer home in the Chicago suburbs. "I realized I wasn't the only mother with a sick child in Ethiopia," says Carolyn. "I am no different, just luckier."

Huffpost: HIV Adoption on the Rise in the US

One of the most difficult challenges, for many families, is deciding whom they will tell about the adoptive child's HIV status. Health care providers must be informed – otherwise, under federal and state confidentiality laws, it's entirely optional whether parents notify school officials, neighbors, or anyone else.

An adoptive family’s blog: HIV: Disclosure

People with HIV are not contagious. HIV is almost impossible to "get." In the last 15 years not one person has contracted HIV by living with another person with HIV. It won't happen. You can contract HIV only through sex, sharing of blood (and I mean a lot of it), or from mother to child during pregnancy, delivery, or breastfeeding.

An adoptive family’s blog: Living with HIV {warning: this blog has music that starts as soon as you open it. side note: I’m not a fan of music on blogs.}

Honestly, our lives are not that much different than any other family. The only real difference is that Victoria has to see her doctor every 3 months and take medication each day.

Project Hopeful: The Disclosure Decision

HIV/AIDS is no one’s dirty little secret. The issue of whether or not a family should hide their child’s leukemia, or diabetes, or down syndrome is a NON issue. I’ve never heard anyone talk about it being that child’s story which only they should share. Kids are born with many diseases yet it seems that HIV/AIDS is the singular chronic disease everyone wants to shame kids for having or at least quiet everyone from talking about. No one bats an eye when a mother blogs about her child’s congenital heart defect. No one condemns her for sharing such personal information about her child without her child’s consent.

informational resources

HIV and Children statistics from AVERT charity

An informational brochure from the NC Bar Association: AIDS/HIV Infection and the Law

A report from the World Health Organization on how to tell a child about his/her HIV: Guideline on HIV Disclosure and Counselling for Children Up to 12 Years of Age

Another report on helping a child understand his/her HIV+ diagnosis: Disclosure of HIV to Perinatally-Infected Children and Adolescents

Project Hopeful: A non-profit with the goal of educating, encouraging, and enabling families adopting children with HIV/AIDS

why we’re letting the HIV cat out of the bag

One of the hardest questions in HIV+ adoption is “who will we tell?”

Legally, we only have to tell medical professionals. As our child with HIV grows up, that child will have to tell sexual partners too. (How I pray that each of our children will only have one, knowing the guidance laid out in the Bible and understanding first-hand how sweet it has been for Lee and me to not know those experiences outside of our marriage!)

If you’ve read this blog long, though, you know that we live our lives out loud. We share about cerebral palsy and epilepsy and autoimmune disorders and depression and more. We might even overshare from time to time.

That doesn’t mean we have to share about HIV, though.

We’re choosing to.

Why? Well, for starters, we don’t think it’s shameful. We don’t want any of our children to grow up thinking that it is.

We know our children will face the ugliness of this world. Jocelyn might get teased for being too tall or too loud. Robbie might get mocked about epilepsy. Zoe could be ridiculed for her body moving differently because of CP. And one of our children might face stigma due to HIV.

Who am I kidding?  All those “might”s are probably more like “will”s.

Instead of hiding from the ugliness, we will face it head on. It will hurt at times. Our hearts will break.

We’ve prayed for over a year about whether or not disclosure is the right decision. It is for us, but we understand why other families make a different decision. You can’t go back. Our advice if a family is on the fence about disclosure: don’t do it. You can always tell later, but you can’t untell news like this.

We’ve done research – talking to doctors and our elementary school’s principal and other adoptive parents and friends with HIV. We’re not naïve. We know we’re choosing a rough road. (For several reasons, though, we’re not sharing which one of our three is HIV-positive, so admittedly we’re not fully disclosing.)

We might lose friends. We might get uninvited to birthday parties, like this family did. We might have to stand firm in the face of the world’s ugliness.

One reason we’re doing this? We’ve seen the whole “it takes a village” thing play out in our family, as so many of you have helped us raise our children by serving in children’s ministry and coming alongside us in other ways. We don’t buy the idea that secrets stay secrets; especially with five other young children, details get shared, whether or not we want them to. In other words, we fully expect that our HIV+ child’s status will get shared, whether intentionally or not. By disclosing now, we can face the realities of disclosure proactively. We can allow people to quietly excuse themselves from our lives – from our village – if they are uncomfortable with our child’s HIV status. Our hope is that we can absorb the blows for our child, facing both gentle questions and harsh comments as they come. If ugly reactions or party un-invitations come too, Lee and I want to be on the receiving end, sheltering our darling one from that pain as long as we can.

We are thankful for friends – like you, hopefully – who will stand with us, and we’re willing to answer any questions you might have.

(In fact, I allow anonymous comments on this blog, so feel free to leave a question without giving away your identity, if you'd like.)

Think HIV+ adoption is crazy and scary? Don’t feel bad; I used to too.

{I’ve written about this topic once before: see this post. Since then, we've announced the adoption of our three precious ones in Uganda and disclosed that one of them is infected with HIV, so I wanted to revisit the subject.}

I know waiting child listings well. After all, I’ve been perusing them for more than a decade, looking forward to the day we’d finally adopt.

(Some little girls plan their weddings or daydream about biological babies. Me? I’ve been an adoption junkie since I was a kid.)

As I looked through listings, I’d pray for these children and their families: both their family of origin, which obviously had broken in some way for them to be available for adoption, and the family I hoped they’d have someday. Sometimes I’d fantasize about having them as my sisters and brothers or, once I was older, as children of mine.

But the ones with those three letters next to their names? HIV? I’d just pray for them… but never, ever, ever consider them as my own.

Because wouldn’t it be dangerous for me and the rest of our family? Wouldn’t our hearts break when they died of AIDS? Wouldn’t we go broke with medical bills? Wouldn’t playing football or any other sport with a risk of bloodshed be out of the question? Could they even have a girlfriend or boyfriend? What about marriage? Grandbabies?

I’d move on.

Someone else could consider those kids.

Not me.

Next.

Now, we’re the “someone else” in that story.

We have three children in our home right now. We have three other children in Uganda, including one with HIV. (We can't show you their faces yet, but see their hands to the right.) We’re learning about ARVs, the meds that can keep viral counts of HIV low, even undetectable, and keep it from ever progressing to AIDS.

We know now, after Zoe’s arrival, that adoption is treated like birth by insurance companies. In other words, no pre-existing conditions are on the table; your new arrival is treated like a brand new baby.

We’ve discovered that we won’t need to worry about shortened lifespans for our kiddo with HIV, because of those fancy schmancy ARVs.

We’ve started peeling back the layers of what dating and marriage and pregnancy and sex looks like for people with HIV, which are all totally feasible and normal, just with an extra layer of knowledge necessary.

We’ve found out how fragile the virus is and how quickly it dies when exposed to air, which is why no HIV transmission has ever occurred from contact with spilled blood.

We’ve realized that HIV isn’t a danger in typical household interactions, because, you know, we’re not down with our kiddos sharing needles or breastfeeding each other or engaging in sexual activity with each other… and those are the primary ways that HIV is spread.

In other words, we’ve realized that the great danger in HIV+ adoption is that these orphans – including one of our children – might never have families. In fact, our group of siblings was going to be broken up because their caregivers in Uganda were certain that no one would adopt the other two because of the one with the virus. Two siblings would not only leave their country after the trauma of losing their family, but they would also have to leave behind one sibling who they love.

That’s scary.

HIV isn’t.

dingle, party of 8

Eight?

Yes, you read that right.

No, this isn’t a belated April Fool’s Day joke.

We started looking into adoption programs a couple months ago, expecting to pursue a country in which the process would be long and hard. We’re not gluttons for punishment, but we know a lot of people opt for the easier countries while orphans sit waiting in the harder ones. I can’t explain it, but we were drawn to the hard places. We figured, why not start now if it will take a while?

Then, we found out about a waiting sibling group through a friend on Facebook.

A group of three in Uganda, ages 2, 4, and 6.

After we talked with the agency and prayed and sought counsel from godly friends, we knew our answer was yes. We knew it was crazy, but we knew we were committed to these beautiful children.

Our beautiful children.

photo credit: rebecca keller photography {she's wonderful!}

See those three additional kiddos in Jocelyn's work of art?

They're our other three children, the ones waiting for us in Africa.

I feel like I should offer some logical or reasoned explanation for why we’re adopting again so soon. But I don’t have one. All I have is this:

Pure and undefiled religion before our God and Father is this: to look after orphans and widows in their distress and to keep oneself unstained by the world. {James 1:27}

Learn to do good; seek justice, correct oppression; bring justice to the fatherless, plead the widow's cause. {Isaiah 1:17}

I’ll be sharing more details in the coming weeks, like what our next steps are and how we’ll be rearranging bedrooms and when we think we might travel and if we'll be done after this.

For now, though, please pray for us. We aren’t naïve; we know this is huge.

Sweet ones, we love you. Mommy and Daddy are coming.

if you feel like you're on the sidelines

This morning was as rough as expected, being the first school day after spring break. First, we slept in. Then Jocelyn whined about wanting to stay home to do all the fun things we didn't do during spring break because of the great stomach bug of 2013.

I went through the motions, packing lunch and motivating Jocelyn to get dressed and making juice cups and heating a bottle of milk and changing a diaper. As I loaded the kiddos in the car, I glanced across the street.

The sweet older gentleman, who brought us flowers the day we moved in, lay crumbled and motionless in his driveway.

My heart stung, every muscle engaged to run across the road to help. But another neighbor was already at his side, and he assured me that he had alerted the in-home nurse. As I pulled out of the driveway, I saw the nurse dial 911 on a cordless phone. Lee returned from walking the dog moments later to offer assistance, but the ambulance arrived just after he did.

I knew my role. I needed to be with my kids.

Still, I felt sidelined from the action. 

I continued going through the motions, answering questions like "Is he dead, Mommy?" and "Why do some geckos have to lick their eyes instead of having eyelids?"

We practiced this month's Bible memory passage for the children's church program.

We made afterschool plans, including a promise that we'd go for a long walk in the beautiful spring weather.

The entire time my mind was on the help I wasn't able to provide to our dear neighbor.

As I dropped Jocelyn off and returned to our neighborhood, I glanced back at the neighbor's now-empty driveway. The water someone sprayed on it didn't wash away the bloodstain.

Instead of feeling remiss that I hadn't been there, though, I realized something:

there are no sidelines

I had been in the action the whole time. While another neighbor and a nurse and my husband and a few EMTs were meant to be caring for that man in his time of need, I was meant to be caring for three darling children in theirs. 

Moms, your action might look different from the action of those EMTs, but it matters. It matters so much.

{thanks to my beautiful friend Tish for letting me share this moment she captured with her son}

When you're going through the motions of caring for your family, what you're doing is valuable. Eternally valuable. 

Why? Because the ones you're teaching and feeding and carpooling and diapering and bandaging, they're valuable. Eternally valuable.

And let us not grow weary of doing good, for in due season we will reap, if we do not give up. {Galatians 6:9}

(In case you're wondering, our neighbor was talking, though disoriented, when he left in the ambulance, and the prognosis sounds good for a man his age. Thanks be to God!)