A Family Article: Adopting an HIV Positive Child
The India Program continues to see the need for families who are open to children who are HIV+, especially older children. There are currently many children who are over the age of 8 with HIV who are waiting for a forever family.
An America World family who has asked to remain anonymous would like to share their journey to saying “YES!” to HIV. They include much of what they learned in their own research process and we felt it would be helpful to other families who might be open to adopting a child who is HIV positive.
Please read the story and information below and prayerfully consider if your family might be open to a child who is HIV+. As always, the America World staff is here to answer any specific questions you may have.
We will be continuing to post more HIV+ children in the coming days and months so please be praying for these precious children and join us in advocating for them!
Adopting an HIV+ Child: Information & Story from Adoptive Family:
For US citizens, without any Indian heritage, India is a medical need or older child adoption program. We purposefully left that detail out of all of our blog posts and adoption announcements. It was a calculated move on our part because we knew which medical need our child would most likely have based on the lists of medical needs we felt comfortable accepting. You see, in order to complete your Home Study, you have to fill out this checklist and answer “yes,” “no,” or “maybe” to a whole host of potential diagnosis’. It’s difficult and heart-wrenching. You would never willingly choose for a child to have any of those conditions. When I was pregnant, I prayed against all of those conditions. But when I was pregnant, I had no choice in the matter – no matter what condition God might have given our child, I would have faced it head-on. Filling out that checklist seemed a little bit like “playing God” to me. Then again, if we said “yes” to every single condition, we would be matched with the most severe medical needs – needs we may not be equipped for financially or emotionally, which wouldn’t be fair to a child in need either. On the flip side, if we checked “no,” that was saying NO to potential children that so many others had probably said NO to as well. We researched for months. We lost sleep over it for months. We wrestled with and agonized over those decisions for months.
Some of those medical needs were easier to say yes to—cleft lip, cleft palate, prematurity, club foot, small hole in the heart, low birth weight, missing digits, different types of birthmarks – those things are considered minor or correctable needs, and many families are open to accepting those needs.
After some research, other needs felt like fairly easy yeses for us too: missing or malformed upper limbs, missing or malformed lower limbs, missing or malformed ears, partial hearing impairment, partial vision impairment, certain types of congenital heart defects, etc.
After even more research, one medical need felt like an easy yes for us, but a lot of people, as we soon learned, do NOT agree: HIV+.
After turning in our medical needs checklist to our agency, we were told that, out of all the needs on our list, HIV+ was one of the items that most people listed as “no.” We were told that because we said “yes,” it was not a guarantee but it was very likely that it would be the medical need (or one of the medical needs) of our future son. I was only a little surprised. It took some research and blogs and webinars and discussions with medical professionals to overcome our own perceptions of the diagnosis. But once we learned more, it was an easy yes.
We are grateful we said YES because it allowed us to be matched with a beautiful 8-month-old baby boy in India whose file stated that he was HIV+. We had infectious disease doctors lined up, insurance ready to go, and a plan in place. We arrived in India and, on the day we met our son, we asked for his latest lab results. They just casually stated, “Oh, his last two lab results were negative. He is not HIV+.” This was confirmed by another test in India and two more tests in the United States. Our son is not HIV+. He was either misdiagnosed or God healed him.
Even though this diagnosis is not our child’s story, I want to share with you what we’ve learned. We had hoped that the stigma around being HIV+ would have lessened as more and more research came out, but we soon learned that was not the case. We did some “field tests” early on to help us decide which level of disclosure we wanted to use. (Some people fully disclose their child’s status- using it as a platform for education, some people only disclose to medical professionals, and some people fall somewhere in the middle of the spectrum.) When talking to friends and family, we had brought up the medical needs checklist we had to complete for our Home Study process. We’d give some examples of some of the medical needs and then throw HIV+ out there among them. We heard all kinds of surprising (and sometimes hurtful) reactions.
NOTE: These were not my responses at the moment, but these were the responses I wish I would have said as I replayed those conversations in my head.
“You need to be wise about this decision.”
While this is true of any decision, adopting a child who is HIV+ does not seem unwise to us. By God’s grace, we have access to medical care and medication that can dramatically help slow down the disease’s progress and prevent other complications. There are grants and programs in most states that will help cover the cost of medical expenses for people who are HIV+. In most situations in the US, it’s required by law that health insurance cover adopted children the same as biological children, regardless of pre-existing conditions. We understand that this diagnosis won’t always be easy for our potential child, especially socially. We aren’t pretending like HIV is no big deal at all. Of course, complications can arise, but typical protocol is daily medication and blood tests 3-4 times per year. Some adoptive families even refer to HIV+ as “the cheater of medical needs adoptions” because it doesn’t typically impact day to day life.
“You shouldn’t say yes to something your own children could catch.”
First of all, all of my children – biological or adopted – are “my own children.” Secondly, did you know that there have been ZERO cases of transmitting the virus to a household member, relative, coworker, or friend through casual or everyday contact? HIV is only spread through sexual contact, birth (although this is even a low percentage of transmission), breast milk, and blood to blood contact (such as sharing needles). Children who are HIV+ can share food, drinks, bathtubs, swimming pools, towels, beds, toys and all other household items with their family members and friends. HIV is not transmitted through urine, poop, snot, tears or sweat. Families who are living with someone who is HIV+ are not required or even encouraged to have annual HIV testing because it’s just not something you can easily “catch.”
“You can let someone else adopt those kinds of children.”
HIV+ orphans often have almost 0 chance of being adopted in their home countries because of misinformation, lack of access to medical care, and extreme social stigmas. Even though there’s still plenty of misinformation about the subject here in the United States, our understanding of HIV/AIDS is much further along than that of many countries. Unfortunately, as you’ll continue to read about, we still have a long way to go in the US as well. So, if not us, then who?
“I wouldn’t feel comfortable having my children play with someone with HIV.”
While it’s definitely recommended and wise to handle the blood of an HIV+ child with care, it is also helpful to know that the risk of transmitting HIV through something like a bloody nose or a skinned knee is very minimal. The child would have to be bleeding into your child’s open wound, which is obviously not very likely. (This is why children who are HIV+ are not discouraged from playing contact sports and why they do not have to disclose their status to their teammates.) The risk of transmission is even lower with a child who is on HIV medications because the medications can reduce the amount of HIV in a person’s system to the point that the HIV is considered “undetectable”, meaning there is only a very tiny amount of virus in the person’s system- not even enough for a medical test to find it! The latest research is even saying “Undetectable = Untransmittable” (even sexually).
“Why would you adopt a child with a death sentence?”
While there is currently no cure for HIV or AIDS (P.S. Those are NOT the same thing!), the medications that are now available to treat HIV are highly effective. It is now considered a chronic yet manageable condition (like hypothyroidism or diabetes) in the United States where treatment is readily available. Children who receive the proper treatment and medications have normal life expectancies.
“You’d need to ask the other daycare families if it was okay for me to watch him with their kids.”
You do not have to legally disclose your child’s HIV status to ANYONE other than medical doctors (and obviously I now regret disclosing to YOU.) No one can make you tell anyone else, and no one should share that information for you either. It’s important to remember that HIV cannot survive for very long outside of the body. It is a fairly weak virus that is killed on surfaces by soap and water. You can never get the disease from simply touching someone, sharing food, using the same toilet, or playing with the same toys. It can’t travel through the air. Coughing, sneezing, spitting or even attending the same daycare will not infect someone.
“He would never be able to get married or have kids.”
Honestly, this was something that I worried about too, but it is just not true. Will the conversations around dating and marriage be different? Absolutely. But, someone who is HIV+ can marry someone who is negative and, as long as medications and precautions are used, not transmit the virus to their partner. Couples can also have children through artificial insemination or a technique called “sperm washing,” but many couples whose viral load is undetectable, choose to try to have a baby “the old fashioned way,” with minimal risk of transmission. Like I said before, “Undetectable = Untransmittable.” There is also a medication that the negative partner can take to help minimize transmission. Science and medicine have come a long way!
“I’d need to know if a student in my class had HIV.”
If a blood spill or accident does occur, simple universal precautions (wearing gloves or using a barrier when wiping up spills, properly disposing of waste, and washing hands) are all that is needed. Also, you are not legally required to tell anyone other than medical professionals about your status. You probably work, go to school, shop at the same store, or live in the same neighborhood as someone who is HIV+. You really don’t need to know about it.
After several similar comments and conversations, we decided that we would not disclose our child’s status if he was HIV+. Society and education have not come as far as we had hoped in the last 30 years. It didn’t deter us from pursuing this medical need, but it did make us more cautious about sharing our future child’s potential diagnosis. It also showed who might not be a permanent part of our lives. Pruning is never easy, though.
Thankfully, we also heard responses that were full of love and grace:
“My first thought is ‘that sounds hard,’ but tell me more about it.”
“A child deserves a family no matter what virus may or may not be in his blood.”
“This journey that you’re on is amazing, and I’m excited to see where God leads you. I know you are seeking Him about what is best for your family.”
“Medical advances have come so far in that area. That’s not a big deal these days.”
“That makes me nervous, but teach me about it. I know I don’t know much, and I’d like to learn.”
“Have you heard Lisa Harper speak? She is a great advocate and educational resource for adoption and HIV+ information.”
I don’t share this to shame people or to blame people. I share this to educate. Knowledge precedes actions. When we know better, we can do better. So, let’s do better.