Kathryn’s Story
Dr. Nathaniel Smith

Kathryn Smith Age 1

“This child is not available for adoption,” the social worker told us curtly. “Is she really not available?” I persisted. The unspoken understanding between us was clear. I suspected that what she meant by “not available” was that this little girl, who had captured our hearts, was one of the twenty or so HIV-infected children living at New Life Home. Given her small size for age and chronic skin problems I was not surprised, but we needed to be able to talk about her medical condition openly.

I am an infectious disease specialist and have focused most of my career, both here in Kenya and in the US, on treatment of HIV-infected patients. In fact, my wife Kim (who is also a doctor) and I had first heard of New Life Home in Nairobi back in 1999 because they were one of the few orphanages in Kenya at that accepted HIV-infected children. We subsequently adopted three Kenyan children from New Life Home, Penny (age 9), Oscar (age 8) and Malachi (age 7). Still, the thought of adopting an HIV-infected child was intimidating.

We both had real concerns about adopting another child, regardless of HIV status. Neither of us are as young as we used to be, and as a breast cancer survivor, Kim was afraid of orphaning the children a second time if she suffered a late recurrence. After two kids, I think parents have to transition to “zone defense,” which we had managed to do fairly well. But with both of us serving as missionary doctors (with Kim taking call as an obstetrician/gynecologist) and two very active boys, the thought of adding a baby into the mix seemed overwhelming.

Still, here we were at the threshold of another adoption, although we didn’t fully realize it at the time. After returning to Kenya in 2006, having been back in the US for several years, we decided to visit New Life Home again to see our missionary friends there and to let the children see where they had “come from.” The home had really expanded, and because of recent changes in Kenyan adoption law, very few non-Kenyan citizens adopt Kenyan children any more. As we toured the “toddler wing,” Kim and the three kids were instinctively drawn to a particular 10-month-old girl who was not yet walking but loved to be held. I tried to remain a bit aloof. After all, we were not there to take home another baby. But I had to admit, she was really cute.

“Kathleen Sifa,” as she was called then, had been brought to the home in January of 2006 after having been abandoned as an infant outside the gate of an expat in Nairobi. After testing positive for HIV, she was started on HIV medications by a Kenyan pediatrician who volunteers to provide medical care for the HIV-infected children at New Life Home. We did not know it at the time, but she was already failing treatment, and her HIV was rapidly becoming resistant to the first-line HIV medications.

Over a period of a few months we returned to New Life Home from time to time and met this same little girl each time. Knowing how complex the Kenyan adoption process had become, we did not feel ready to consider that step again, but we asked about taking “Baby Kathleen” home with us over Christmas to give her a bit of an exposure to a family setting. The social worker said that would be fine, so we signed the appropriate paperwork and returned to take her home with us a few days before Christmas 2006.

So after much prayer and discussion as a family, we began our short and unsuccessful career as foster parents. We soon discovered that we were much better at taking babies home with us than we were at giving them back. We should have been suspicious when the Kenyan caregivers at New Life Home sent us off with a huge bag of clothing and over a month’s supply of medications. “We’re only taking her for a week or two,” I protested, but they acted like they weren’t expecting us back any time soon. I guess the folks at New Life Home just knew us too well.

The adoption and immigration process had been every bit as complicated and frustrating as we expected, and over a year later we have still not yet completed the final step in her adoption. Having been through this three times before, we have learned to expect the unexpected and to trust God to carry us through to the end. After consulting with a pediatric HIV expert in the US, we switched Kathryn (as we now call her) to a different combination of HIV medications, and her HIV has been fully suppressed for over a year. She is bright and healthy and is back on her growth curve. In every other way, she is a perfectly normal and healthy 2-year-old.

Despite persistently high levels of stigma in Africa, I think it is still relatively easier to parent an HIV-infected child here than it might be in the US. There are so many HIV-infected children here in Kenya that most people to not get so hung up about it anymore. Still, we have had some issues to address with family, friends and our missionary community.

Although supportive, our families back in the US questioned our decision to adopt an HIV-infected child. My sister and her family had readily agreed to serve as guardians for our older three children if anything should happen to us, but she was reluctant to sign on to raise a “dying child.” We waited some time before sharing Kathryn’s HIV status with our parents, but then they surprised us by how well they handled the news. If my mother had had any reservations about being “grandma” to an HIV-infected child, they all dissipated when Grandma Smith came to visit us in Kenya this past Christmas and took her youngest granddaughter in her arms for the first time.

We do have some concerns about how other members of the community might react to Kathryn’s HIV status as she grows older. When we were in the US, Kim mentioned to the teacher of one of our older children that he had been “HIV exposed,” meaning that his biological mother had been infected with HIV but that he himself was not HIV-infected. HIV exposed babies initially test positive on HIV antibody tests because antibodies from their mothers pass to them while they are in the womb. By the time they are 18 months old, however, the mother’s antibody is gone, and they test negative.

Unfortunately, the teacher Kim spoke with did not understand the difference between HIV exposure and HIV infection. A short time later the principal of the private Christian school he was attending called us demanding that our son be retested for HIV on a regular basis. Fortunately, at that time I was Medical Director for the HIV division of the state health department, so I had my HIV Program Nurse call the principal to clear up the misunderstanding. The experience, though, taught us that there is still quite a bit of misunderstanding about HIV infection in children.

We feel strongly that it is important for Kathryn and the other children to understand her HIV status in an age-appropriate way. If HIV is never discussed openly, children come to think of it as a shameful thing and may imagine things about their condition that are not true. Disclosing a child’s HIV status becomes more difficult as the child grows older unless the topic has been previously discussed openly in an age-appropriate way. On the other hand, disclosing the HIV status to an infected child or to the siblings can make it difficult or impossible to maintain confidentiality in the community or at school.

After we talked to the older children about Kathryn’s HIV infection, they were able to handle the information okay, but soon many of their fellow students and teachers were aware. In our relatively small missionary community here in Kenya, this has not been a problem, but it might be more difficult in another setting. We want to be as open as possible about Kathryn’s HIV status, but we would prefer those who learn about her HIV infection to have enough knowledge to appropriately interpret the information.

One day our older daughter Penny came home from school in tears. That day they had learned about HIV infection in class. She was told that people who are infected with HIV will die. She was upset by the thought that her little sister was about to die. I sat her down and asked her if Kathryn looked like she was about to die. She thought about it for a moment and concluded that Kathryn did not look like she was about to die. Then we went on to talk about Kathryn’s HIV medications and their impact on her prognosis – of course, not using those exact words.

Having an HIV-infected child has, I believe, helped all of us in the family become more sensitive to the situation of others who are living with HIV, caring for HIV-infected children, or both. I think it has helped make me a better doctor and advocate for my HIV-infected patients. Kathryn is pretty much oblivious to her infection, which has helped the rest of us see beyond HIV as well. We are reminded daily that a virus does not need to define one’s existence, and we are all learning to live positively.

Although it is true that HIV used to be, and often still is, a death sentence, people who have access to effective treatment are living longer and healthier with HIV. In another 10 or 20 years, who knows what advances will be made in the treatment of this infection. Kathryn’s future is not as clear as we would like, but she is such a blessing to us now, and we have hope in Christ for the future.