Easiest special need ever

The first time I remember hearing about HIV, I was reading an article about Ryan White. In it, his mom was interviewed and talked about how she was not scared of catching HIV. That she hugged him and kissed him and shared his soda. I remember wondering why anyone would be scared to catch it from hugging or kissing or sharing soda. I was in middle school probably, but knew it could not be spread by casual contact.

The next time HIV blipped my radar, I was in nursing school. We went around the room introducing ourselves and said what area of nursing we were interested in. My answer was pediatric nurse practitioner (I got that half right!). One of my classmates said emphatically, “HIV/AIDS—that is what I want to work with.” I remember thinking that would be an intriguing population to work with.

The first child I met who was HIV-positive was during my hospice clinical rotation. The girl was 6 or 7, her braided pigtails flying behind her as she played. I asked her hospice nurse how in the world she qualified for hospice (in order to qualify, a physician must say they do not expect you to live longer than six months). The nurse said that she will most likely live to be an adult (this was the mid-1990’s and the new medications were just beginning to be available), but no one knew for sure. That little girl was so full of life, and so adorable, I could not fathom her life may be cut short because of a virus.

Fast-forward over 15 years (how did that happen so fast?). We are beginning the adoption process for our daughter. It was time to fill out that medical checklist. Which medical needs would we be ok with? Many needs made that list, including hepatitis and HIV. I think that was the point where I knew that adopting a kiddo with HIV was in our future. We knew that HIV was considered a treatable, chronic condition. It no longer was a death sentence. HIV is easier to manage and has fewer complications than diabetes.

We did pounds and pounds of adoption paperwork. We completed our parent training. We excitedly told our families who were overall supportive. Then the day came that we got The Call. It was our 15th wedding anniversary. The agency rep said they had the file of a girl younger than we’d requested, but otherwise fit our medical checklist. She had cleft lip and palate, hepatitis B, and some hearing loss. Did I want her to email the file to us? Well, I thought that was a silly question.

We both knew when we opened the file she was ours. We raced through more paperwork, and finally traveled to China and arrived home in February 2013. She had several medical appointments, including the cleft team and a GI specialist who would manage her hepatitis B. Her labs came back and she was hepatitis negative. The doc called the lab and spoke to them to be sure. We have no idea why the labs in her file said she was hep B positive. We settled into our new life of parents of three kids.

In April (yes about two months after arriving home) I saw the face of a little boy in a waiting child group. He was 5 1/2. He was HIV positive. He was the cutest boy in all of China. I loved him. We just got home though. We were broke. We were trying to find our new normal. So I advocated for him. Surely I could find this sweetheart a family. Time passed. His sixth birthday came in July and I grieved.

After much prayer, we decided that we were his family. One small issue. His file was assigned to another agency. We wanted to reuse our dossier paperwork to save time and money (a family can reuse much of their adoption paperwork required by China if they submit a LOI [letter of intent] before the one-year adoption date of the child who just arrived home). I called the other agency. They wanted to keep his file one more week, and then they would transfer it. That was one of the longest weeks of my life. I called back exactly a week later. The agency rep said they requested the transfer the day before. Our agency emailed very soon after saying they had his file.

We did more paperwork. It was near our anniversary again (16 years!), so we announced to family that our sweet David (not his real name) was our gift that year. We did more paperwork. We moved to a different state. That required more paperwork. We scrimped and saved and went into debt to pay fees and travel. In April 2014, David joined our family, about a year after I first saw his picture.

He slid into our family seamlessly. He is the happiest, most easygoing boy. He is learning what it means to be in a family. The HIV affects us daily, but it doesn’t. He takes meds (3 different antivirals) twice a day. He needs labs every 3–4 months. His viral load has always been undetectable, so technically he cannot pass it to anyone. Other than David getting tired more easily than our other kids, HIV does not affect his health very much. He is a normal healthy kid. He loves swimming and dragons. He loves ice cream but still does not like cheese. He fights with his siblings.

I am much more aware of the perception of HIV in the general public. My heart breaks when I hear stories of a mom losing custody of her kids because her new fiancée is HIV-positive. My heart soars when families with one HIV-positive parent posts pictures of his HIV-negative family—including his kids. I feel heartbroken when I hear of a housekeeper in China whose husband wants a divorce and custody of their children because she simply worked for a family who was fostering a child exposed to HIV at birth.

The truth is in China the stigma is much worse when compared to the U.S. People living with HIV are routinely denied jobs, housing, and medical care. This breaks my heart. I have willingly become an educator and advocate. I make it well known that I am always willing to answer HIV questions, without judgment, no need to be embarrassed. Asking questions is how we learn.

I have a confession. When I traveled to get our David, my good friend went with me. She is also a nurse, and we both have seen a lot of different medical needs. We both had adopted from China’s Waiting Child program before, and had experienced several needs in our own families. Twice a day, when it was time for David to take his meds (which he did by swallowing the pills all at once), we would gleefully look at each other and one of us would say, “Easiest special need ever!” We felt like we had a secret. David was so healthy, such a normal 6-year-old boy, it felt like he had no special need. And we still feel that way. 

1. What about boo-boos and blood? Do your kids know what to do when they bleed? Are there any risks if my kid plays with a child who is HIV-positive?

HIV has never been spread through casual contact. Bleeding boo-boos are not scary. HIV is killed quickly by contact with air. Any spilled body fluid has to get into the bloodstream to infect someone—which is hard to do. Putting on a Band-Aid happens the same way it does at your house. Intact skin is the best defense against any virus. We teach all of our kids not to touch other people’s blood. That is the medical part of me though—it has nothing to do with HIV. I don’t want my kids touching anyone’s body fluids – that is just gross and unnecessary. They know to come get a grown-up if they see blood. There are no risks for children playing together. They can pass on the flu or colds—but not HIV.

2. If I adopt an HIV-positive child—what if she gets sick? Will she end up in the hospital from a cold? Do I need to worry about her immune system?

All kids get sick. It is part of life. Yes—you would watch a bit more closely, but it really depends on what her immune system is up to. A cold does not mean a hospitalization. The medications used to combat HIV also help normalize the immune system. Most of the time the body will fight it off just like it would for anyone else. Of course there are exceptions, and sometimes kids living with HIV do get sicker. Just like cardiac kids, or diabetic kids, or any kid that deals with a chronic medical condition. There are things you can do to help your kid’s immune system. The most important thing is frequent hand washing. In our family we use vitamin C and D as immune boosters (especially in the winter). We also avoid gatherings when others are sick. That also has more to do with my not wanting the kids to get sick than the HIV. Sick kids are not fun!

3. How often are doctor visits? How much do the meds cost? How often is lab work?

Doctor visits with the pediatric infectious disease (or PID) doc are every 3–4 months for most kids with HIV. Labs are the same frequency. The medications are usually covered well under insurance, and if not there are medication programs to help reduce the cost if needed. The families I polled pay about $35–80 per month for all the meds. We fall in the middle of that.

4. What if the meds don’t work? What if the child becomes resistant to the meds? What about medication side effects?

Drug resistance usually occurs when the medications are not given consistently. Missed doses or frequent medication changes can lead to drug resistance. There are now very sophisticated tests that help the PID if this situation arises. There are two different types of HIV (HIV-1, which is the most common, both in the U.S. and globally, and HIV-2, which is relatively uncommon and found mostly in West Africa), and each responds better to different meds. There are five categories of HIV meds, and around 30 different meds total. Research is being done to increase the medication options. If resistance occurs, there are tests for that too. The resistance tests (all of which are blood tests) help determine what the next step will be. Thankfully this is rare, and PIDs are usually more than willing to collaborate with each other.

There is still a great deal of research in HIV. I talked with several people who have kids who are drug resistant and none of them regret choosing this medical need. So far all have found treatment options—different combinations of medications or even research trials. My advice would be to call your local PID and ask them how they would handle this. The meds can have side effects, and like any med it really is dependent on the individual. We have been through one med change because of side effects. There are many medication options out there and finding the treatment regimen that has the least amount of side effects may take time. Part of the quarterly lab work is monitoring liver function and such to keep an eye out for early indicators of side effects.

5. What is the long-term prognosis? Can a person living with HIV marry an HIV-negative person and not infect them?

People with HIV have normal life expectancy. Dying from AIDS is pretty rare. A person with HIV can marry andhave kids (even the old fashioned way!), without infecting their partner (or baby if they are the woman). Magic Johnson and his wife have been married many years, and she is still HIV negative.