Across North America, a new kind of special needs adoption is on the rise: the international adoption of children living with HIV.
As recently as a decade ago, stigma, fear, and strict immigration policies meant adopting a child with HIV wasn’t even an option. Now, through increased awareness, advocacy and education have led more and more families to consider this possibility. In British Columbia in the past two years, two families have completed the first international adoptions of children known to be HIV+. Now safely home and under the treatment of expert care providers, these children are happy, healthy, thriving faces of a new kind of adoption.
Around the world, over 15 million children have lost one or both parents to AIDS. Many of those orphaned children are themselves HIV positive. In resource-poor settings, however, one-third of babies with HIV will die before age one, and almost all will die before the age of five. Even in countries such as Lesotho, where one in four adults is living with HIV and whose government offers free HIV treatment to its population, only one quarter of children with HIV actually access treatment, and one third still die before age 5. The handful of years they do live are often plagued with illness, stigma, and suffering.
Treatmeant means children with HIV can live long, healthy, normal lives
In stark contrast to this heartbreaking scenario, treatment with powerful anti-retroviral drugs (ARVs) can stop the progression of HIV. This prevents the development of Acquired Immune Deficiency Syndrome (AIDS) and means people living with HIV can expect long, healthy, normal lives. Any side effects from ARVs, if they develop, can usually be managed successfully by adjusting medications.
In other words, thanks to ARVs, HIV/AIDS is now considered a chronic but manageable disease in in Western countries. Day-to-daylife with an HIV+ child in Canada looks almost identical to life with any other typical child. It is often equated with diabetes in terms of care requirements.
“The only differences are morning and night administering of meds (ARV’s) and a once every three month appointment at a clinic for a check up and lab work,” says Dana*, who adopted her daughter, now a busy preschooler, a year and a half ago.
“At the end of the day, raising a child with HIV is just like raising any other child,” agrees Elena, who recently brought her daughter home at 10 months old. “Each child has their own unique needs.”
Did you know?
HIV is transmitted in three main ways: sexual contact, IV drug use through the sharing of dirty needles, and mother-to-infant (during pregnancy, birth, or breastfeeding). It is found in blood, semen and vaginal fluids, and breastmilk. HIV has never been transmitted through normal family living conditions. You cannot get HIV from any of the following activities:
"We never worry about transmission."
Families may worry they or their other children may be at risk of HIV infection if they bring a child living with HIV nto the home. That worry is unfounded. HIV cannot be transmitted through casual everyday contact. According to the CDC, there hasn’t been a single household transmission of HIV in over 15 years. “On a day-to-day basis we do not even think of HIV,” says Dana. “We teach our children universal precautions but never, ever worry about transmission.“ Elena agrees. “The HIV part is the least of our concerns. She is healthier than any child I have been around. She is just a regular child.”
The all-important ARV medication, as well as blood work and other medical care, that keeps Elena and Dana’s kids so heathy is freely available to Canadian families who adopt HIV+ children. B.C. Women’s Hospital’s Oak Tree Clinic, in particular, offers specialized care to HIV+ children and women and will work with adoptive families, even if they don’t live in the city.
“The resources are amazing no matter where you live in B.C. ,” says Elena. “You would still work closey with Oak Tree Clinic and your doctor. The system is really well designed.” Education and support services are also widely available.
Why consider adopting an HIV+ child?
Faced with the stark contrast between outcomes for HIV+ children who remain orphans and those who are adopted into families with access to appropriate medical care, perhaps the question should be “Why not?” With popular “sending countries” such as China, Russia and Ethiopia slowing down or closing their international adoption programs, special needs international adoptions are an option more and more families may consider. Children living with HIV wait for adoption in countries as diverse as Lesotho, Rwanda, South Africa, India, Thailand, and Kazakhstan.
What are Universal Procautions?
Universal precautions were created to prevent the transmission of HIV, Hepatitis B, and Hepatitis C in school, work, home and healthcare environments. They provide clear instructions for the safe management of potentially infectious bodily fluids. The simple guidelines can be instituted in any setting – school, work, or home – and require no special materials. The first principle is “In order to be safe and not to discriminate, assume that everyone is infectious.” This principle, when followed, prevents discrimination against infected people by removing any need for those individuals to disclose their status.
For more information, download the Universal precautions brochure from the Canadian HIV/AIDS Information Centre at pubs.cpha.ca/PDF/P7/19661e.pdf
For Dana’s family, the choice to adopt an HIV+ child was inspired in part by first-hand experiences in AIDS-wracked Africa. “There was a specific experience I inadvertently witnessed when a doctor at a clinic told a very sick mother that her child was dying,” says Dana. “Her grief was tremendous, and it affected me profoundly. It put faces and real emotion to sta
tistics and words. It gutted me. The thing that has never left me is how unnecessary all the death and suffering is if there is access to adequate medical and nutrition support.”
An electronic version of a similar encounter inspired Elena and her husband to consider HIV+ adoption. “When I first started to look into adoption, I knew right away that I did not want to adopt a child that was considered healthy and easy to adopt. I came upon a video about a child who was 4 years old, and he was basically living by himself on the outskirts of his small town. His grandmother would bring him food once a week and would not go near him. I knew right from there that I would have no problem if my child had HIV.”
As with every type of adoption, prospective adopters need to think carefully about their choice. “I would suggest that families need to carefully assess whether this is a medical need that they are comfortable with and feel able to handle,” says Dana. “I also feel that families should carefully assess their motivation. A motivation based on purely wanting to save a child can lead to frustration in the future when the day-to-day parenting takes place.”
Disclosure: it's your choice
Families will also need to spend time considering how they will deal with issues around privacy and disclosure. “Sadly, stigma is alive and well, and often founded in ignorance and fear,” says Dana. People with HIV (and their families) have no legal obligation to disclose their status to anyone other than health care providers and, under certain circumstances, sexual partners. It’s up to each individual family to decide if, when and how they will disclose to friends, family, neighbors, teachers, and anyone else in their life.
Dana and her family chose to tell their immediate community about their child’s HIV status before her adoption. “We wanted to give people lots of time to ask questions, and so that if there was a negative reaction it would not happen in front of our child. The only reason we have ever felt compelled to disclose is to create a community for our child to grow up in that is accepting, open-minded, supportive, and protective. We want this to be as normalized as possible for our child.” Elena chose a similar approach to disclosure. Both families experienced overwhelmingly positive reactions, with only a handful of people reacting out of ignorance and fear.
Along the same lines, adoptive parents need to consider how to discuss their child’s HIV status with the child. Elena and Dana agree that parents should strive to normaize their child’s HIV status by being honest and open, while taking into account their child’s age and developmental stage. “My husband and I never want our child to feel that there is something wrong with her because she has HIV,” Elena says. Children’s books can be helpful tools; see the sidebar for links to book lists.
The right choice for your family?
As awareness, education and advocacy increase, Canadian families will surely continue to adopt HIV+ children. You can support people living with HIV/AIDS by educating yourself and your community, spreading awareness and accurate information, and advocating for worldwide access to ARVs and implementation of universal precautions in schools, workplaces, and homes. Or maybe – just maybe – you might decide adopting a child with HIV is the right choice for your family. “I don’t believe it’s for everyone,” says Dana, “but I do believe it’s for more people than they think.”
(*Names changed by request to protect families’ anonymity.)
Brianna Brash-Nyberg is the assistant editor of Focus on Adoption and an adoptive mom of two young daughters. In her off hours, she is a published poet, nature lover, and avid reader.