Conversation: HIV & Your Child
Dr. Nathaniel Smith and Family 

What have been the greatest blessings and challenges of having an HIV-infected child?

Nate: Kathryn is such a delight. Getting one of her famous hugs when I get home at the end of the work day is a real treat. Although our situation is very different from most parents caring for HIV-infected children, I feel that I am able to identify better with those living in families affected by HIV. I have certainly learned a lot of the “nitty gritty” of pediatric HIV medications that many physicians never really get to know. I’m talking about things like which of the HIV medications taste the worst, which one dissolves the numbers off the syringe, and how to get an uncooperative 2-year-old to take medicines when she just doesn’t want to.

My biggest challenge has probably been how to be both daddy and doctor at the same time. I am not Kathryn’s primary doctor, but in our setting here in Kenya, I am the senior HIV consultant. Decisions that seem pretty clear when it is someone else’s kid begin to get fuzzy when it is my own daughter.

Kim: I think the challenge is not knowing what the future will hold. I feel very protective of her because she is sick, but she is not really sick. I don’t want to treat her like she is sick, but at the same time I know she has the virus. I also worry about how the rest of the world will treat her. Will they treat her as equal to other children even though she has HIV infection? I’m not sure I am adequate to prepare her for all that lies ahead.

The blessing is seeing her grow up healthy just like anyone else. Having a part in changing her life feels like a great accomplishment. It is a good feeling to know that we are giving her a second chance, even more so than for our other children. With the others, if we had not adopted them, maybe someone else would have, or at least they would probably have grown up healthy. With Kathryn, it is like we were her only chance.

What is it like having a sister who has HIV infection?

Penny (age 9): It is sort of scary, but it is fun to have a sister. Every day you want to make sure she takes all of her medicines, and every day you worry about whether something might happen to her. I love having a sister, though, and it’s fun to watch over her and make sure she finishes all of her “dawa” (medicine). Kathryn is like an alarm clock in the morning; it is fun to wake up early.

Oscar (age 8): Bad. But Kathryn is fun. She plays with me a lot, and I take her on walks. If nobody took care of her, though, she would get really sick, and she could die.

Malachi (age 7): Scary. She has to take medicine, and that scares me. Sometimes I think she might spread the HIV to us. Kathryn is fun, though. She plays with us, and she is silly. It makes me sad that she could die.

What advice would you give to parents considering adopting an HIV-infected child?

Nate: As with any decision to adopt, I think it is important to first examine your motives carefully. Each of our children is a blessing from the Lord, not a “project” or “charity case.” One of our older children was with another family for a year before he came to live with us. They had intended to adopt him, but for various reasons could not follow through. We really struggled for the first few years to help him feel loved and a part of our family. Children need parents with a lifetime commitment, not just good intentions.

I would also encourage parents who are considering adopting an HIV-infected child to carefully count the cost. Taking care of an HIV-infected child is not really that much different than taking care of any other child, but the medications have to be given every day, every dose. Neither Kim nor I are particularly good at taking medications for ourselves, but we have never missed a single dose of Kathryn’s HIV medicines. If your lifestyle or home environment is not able to accommodate this aspect of care, then adopting a child with HIV-infection might not be a good idea.

Consider the attitudes of your extended family and close friends. If they have major objections to your adopting a child with HIV infection, take some time to work through this first. You may be able to go it alone for a while, but eventually you will need the help and support of those closest to you. Also, honestly assess your limitations. Because of our medical background, Kim and I felt we were reasonably well-equipped to care for an HIV-infected child. There are other types of special needs, though, that we would not be so well-prepared to handle.

Most importantly, take the decision before the Lord in prayer. Parenting is often challenging work, but it is always spiritual work. We are not afraid to face the particular challenges of raising an HIV-infected child because we know the Lord will always be with us to give us strength and direction. It is His presence that gives us hope.

Kim: Read about HIV and be informed. I think the big thing that people worry about is whether the child will spread HIV to others. Even as a physician, I still had questions about how to safely care for an HIV-infected child. It is important to know that you can treat an HIV-infected child just like anyone else. If Kathryn doesn’t finish eating her orange, can I finish eating it myself? Do I have to worry about the other children getting infected? She doesn’t live in a bubble. Unless you are well-informed, you risk putting her in a bubble, and that would be very damaging to her.

Also, try to talk with someone who has already adopted an HIV-infected child. That would be a big help.