When I arrived at the cozy and chaotic Chicago third-floor walk-up of Terri Smith and Brad Roback last winter, it felt like any of the hundreds of other child-inhabited homes that I've been in. Baby bottles were scattered across the kitchen, toys and semi-folded laundry plopped everywhere, the dogs barking for attention. Terri was sitting at the kitchen table with her 23-month-old daughter, Sachi, sharing homemade pureed squash soup. Clad in a giraffe bib and multicolored knit booties, Sachi peered up with huge brown eyes at her mom, angling for a spoonful. Mom obliged, offered me a bowl, and as I sat down across from her, she helped herself to a taste.
I'm ashamed to admit that this seemingly innocuous, everyday exchange took me aback. That's because Sachi is HIV+. Like many of the two million other children worldwide living with a disease that has for years been considered a death sentence, Sachi, born September 10, 2007, contracted the virus from her birth mother, who was a sex worker in Mysore, India. Had her mother known of her status, or had access to powerful antiretroviral medications, Sachi likely would have been born HIV-. (To wit: Globally, more than 1,000 children under the age of 15 are infected with HIV every day worldwide, according to the UNAIDS 2008 Report on the Global AIDS Epidemic; In the U.S., thanks largely to the availability of these drugs, an estimated 100 to 200 infants are newly infected with HIV annually.) Terri and Brad adopted Sachi in 2008, making her the first HIV+ little girl to be adopted out of India. Terri met Sachi when she was just a month old, weighing five pounds and able to take baths in a teeny bucket. Her status was not known at the time.
The reason I said I'm ashamed of my reaction above? I'm a professional health and medical writer. I have a Masters of Public Health degree. I consider myself about as educated and aware as one can be when it comes to issues like HIV. And yet...my gut reaction to seeing a mother and daughter sharing a soup bowl and spoon was still, "Wow, they're sharing utensils." As I spent more time with the family, that initial surprise, both unwarranted and uninformed, faded away. Clearly, I know there's no risk of transmission there - unless both people had open, bleeding ulcers in their mouths. I also know there's no risk of transmission from wiping runny noses, changing poopy diapers, kissing boo boos or sucking on little baby toes. But the fact remains that my initial thought was one of surprise, and it's representative of how so many people continue to view HIV.
That needs to change.
Families like Brad, Terri, and Sachi are helping to bring about that much-needed transformation. They're part of a small but growing group of would-be parents looking to bring a child into their homes and lives. Coupled with the increasing manageability of HIV in areas with access to medical care, children like Sachi are finding homes...and thriving. I recently had the pleasure of interviewing them for a story in Parenting magazine, "An HIV Adoption Story" (December 2009 issue.) While no hard numbers exist for HIV adoption, the field is growing by "leaps and bounds," Erin Henderson, the coordinator for HIV-positive kids at Adoption Advocates International in Port Angeles, WA, told me. In 2005, AAI helped two HIV-positive Ethiopian children come to the U.S.; in October 2009, the agency had 45 such adoptions in process or completed
While we spoke that winter night, Terri and Brad told me of how they learned their daughter Sachi Tulip (Sachi means "Grace" in Sanskrit) was HIV+:
"While in India for that first month, trying to navigate the relatively non-existent adoption process, a friend suggested having the infant tested for HIV. Terri and Brad had known Sachi's birth mother was a sex worker, but the sexually transmitted infection hadn't crossed their minds. Concerned that a Westerner bringing an Indian infant (with which she had no legal ties) to get tested would raise eyebrows, Terri's friend Deepak took her. The results were immediate, and he returned elated, announcing, "Good news! It's positive! She doesn't have it!" (Despite its prevalence, the disease is still largely misunderstood in third world countries.)"
But Sachi did have it. Still, Deepak's response is typical of the level of misunderstanding shared by so many people worldwide. While writing this story, I repeatedly fielded reactions of shock and surprise from friends, family, and acquaintances. No one knew that HIV adoption was actually happening. But the fact is, science and medicine have come so far that "we would rather treat pediatric HIV than juvenile diabetes," Kenneth Alexander, MD, PhD, chief of pediatric infectious diseases at the University of Chicago, told me. "If you look at how well our medications work, there's no reason to not expect Baby Sachi will one day see her grandchildren." (Though resistance to antiretrovirals can happen when people don't take their medications as prescribed, children often do very well on their first medication regimen because, with their parents' help, they're not missing doses. Children are also typically tightly monitored for signs of resistance.)
"Many people's views of HIV are 20 years old," he explained. "It's no longer a landscape of death and destruction." The way Dr. Alexander, who brought Sachi's story to me and Parenting, sees it, besides not being able to donate blood, the world is Sachi's oyster, full of opportunity to play, study, laugh and live. And families like the Robacks are making that possible.
I encourage you to read the article in Parenting and learn more about the unique challenges and happy surprises of raising a baby with HIV. If you don't click over, please let it be my pleasure to let you know that Sachi has transfored from a slumping, malnourished infant to a bubbly, giggling little girl. When she first came to University of Chicago, her viral load (a measure of how many "pieces" or copies of the virus are in the blood) was over 300,000 copies/mL. Thanks to her routine of antiretroviral medication, her viral load is now undetectable. (That doesn't mean her HIV is cured, but that it's below machine-measureable levels.) If things continue to progress like this - and there's no indication they shouldn't - Sachi will grow up, get married, and give birth to her own HIV- children, even grandchildren. After their daughter took her first steps last December ago and uttered her first word - "Mama" - two months later, Terri and Brad were over-the-moon, as any parents would be. "It was just the most thrilling thing, to see her own sense of achievement around it," Teri recounted with joy. "It was priceless. We know she's going to reach her potential, and it will be good as anybody else's."
Remember what's risky...and what's not
Your child - or you - cannot contract HIV by:-
-swimming or bathing together
-changing a poopy diaper
-hugging and kissing
-playing with a drool-covered toy
-sharing a bed or toilet
-eating food served in the home of an HIV+ child or sharing utensils, food and drinks
There are only four ways you can get HIV:
-through unprotected sex with an infected individual
-blood-to-blood contact, including sharing needles with an infected individual
-breastmilk
-mother-to-child transmission (in utero or during delivery)
Interested in learning more?
From HIV to Home A non-profit working domestically and internationally to connect HIV+ orphans with adoptive families.
Chances by Choice An adoption advocacy agency in Oak Park, IL, specializing in international HIV+ adoption.
Project Hopeful
Rainbow Kids An adoption advocacy website with tons of information on HIV adoption
Positively Orphaned blog
Must-read book:
There is No Me Without You (Bloomsbury, 2006) by Melissa Fay Greene - the touching, true story of an Ethiopian widow who opened her door to AIDS-orphaned children.