The Most Hopeful Thing

In 2007, the Smith family brought home Jenni, the first child with HIV adopted from India. Today, their daughter is a bright, busy, healthy toddler thriving in the love of her parents. In sharing their story with Holt, they tell the truth about this particularly stigmatizing special need – a truth that is much more hopeful than many might expect.*

Any advice or HIV information in this article should be discussed with a medical professional specializing in the treatment of HIV/AIDS.

When Dr. Ken Alexander first met Jenni, she was “laying on the bed, just floppy like a ragdoll.” At 11 months old, she was the size of a newborn.  She was listless and dehydrated and suffering from chronic diarrhea.  She could not lift herself to sit up.

Standing by Jenni’s side were her new adoptive parents, Sarah and Mark Smith. Turning to the Smiths, Dr. Alexander said, “I know there’s nothing you want to do more than pack her in cotton and take her home and love her, but it will take at least ten days before she can go home.”

After a four-flight, 32-hour journey to bring their daughter home from India, the Smiths were relieved to place her in the care of Dr. Alexander, chief of pediatric infectious diseases at the University of Chicago Comer Children’s Hospital.

Ten days apart would be manageable – especially given Jenni’s hopeful outlook.

Twenty years ago, her outlook would not have been quite so hopeful. Born HIV-positive in India, Jenni had never received treatment for her illness, allowing the virus to replicate to dangerous levels.  As soon as possible, Dr. Alexander placed Jenni on a drug treatment regimen that would save her life.

In 1984, when he began treating HIV/AIDS patients, he didn’t have those drugs to give.  Most children born with HIV didn’t make it to their second birthdays.  “I went to an awful lot of funerals,” he says.

But HIV is no longer the death sentence it was twenty years ago. “Now,” he says, “we can give medications to a kid that’s at the brink and looking over the edge, and reconstitute her immune system.”

With medication, Jenni has not only made it to her second birthday, but her third and fourth.

“Today, if you meet Jenni, you’ll meet a nice, big, pot-bellied toddler who for all intents and purposes is totally normal, except for hearing loss,” says Dr. Alexander. “She’s bright, talkative, busy, all those things you want a toddler to be.”

As for her viral load, once well into the danger zone, it’s now undetectable. The virus cannot be found in her blood.

“She’s a healthy, regular 4-year-old kid, and if you didn’t know she had HIV, you would never guess anything is wrong with her,” says Sarah.  “I would encourage anybody to adopt an HIV-positive child.”

Adopting Jenni

Four years ago, Sarah and Mark did not foresee themselves championing the cause of HIV adoption – much less parenting an HIV-positive child.  When they discovered that their prospective daughter had HIV, they wondered how long she would live, how much she would suffer. Worried about the heartache in store for them, family members urged them to reconsider.

Like most Americans, their knowledge of HIV/AIDS needed some updating. In 2009, the Kaiser Family Foundation conducted a study to learn how informed people are about the disease. Findings showed that in the U.S., knowledge about HIV/AIDS had not increased since 1987 – a year when the term “HIV” was still relatively new, and testing positive still considered a death sentence.

To learn the state of HIV/AIDS in 2007, twenty years later, Sarah and Mark began to research.  They discovered several exceptional resources close to home, including the University of Chicago Adoption Center at Comer Children’s Hospital.  Directed by Dr. Alexander, the Adoption Center works closely with the hospital’s infectious diseases staff to counsel families adopting children from overseas.  Here, they also met Linda Walsh, a nurse practitioner who directs the hospital’s pediatric and adolescent HIV care team.

Illinois agency Chances by Choice, specializing in HIV adoption, proved an invaluable resource as well.  The agency put them in contact with other parents who had adopted HIV-positive children.

What the Smiths learned from these resources both subverted their perceptions, and eased their fears.

“We learned that the medications were really good and that kids were living well into adulthood,” says Sarah. “Kids with HIV are expected to live a normal life span.” They spoke with pediatricians who characterized HIV as a chronic, but manageable disease like diabetes. One pediatrician even told them that he would rather treat a child with HIV than a child with juvenile diabetes.

“We learned it’s not a death sentence,” says Sarah.  “It’s a chronic illness.”

They also learned that with medical advances, HIV-positive women can give birth to HIV-negative children.  “I think that’s most surprising to people – that these kids can grow up and have families and that the technology is out there that allows HIV-positive girls to give birth to HIV-negative babies,” says Sarah.

“We can stop the transmission from mother to child 99 percent of the time,” says Walsh, who also serves as clinical director of the Adoption Center.

Despite such breakthroughs, transmission through casual contact remains a common fear – and pervasive myth – about HIV/AIDS.  Even in a close family setting, the likelihood is next to nil.

“We’ve now got three decades of experience with this virus and it has never been transmitted in a family setting,” says Dr. Alexander.

To spread HIV, blood must be shared.  And doing so actually takes some effort.  The three main ways to contract the disease are through sexual contact, IV drug use, and from mother to infant during pregnancy, birth or breastfeeding.  It cannot spread through touching, kissing or sharing food, and even blood spilled outside the body poses a diminished risk.  According to Project HOPEFUL, a nonprofit organization that advocates for adopting children with HIV, no one has ever reported a case of HIV transmission from contact with spills of blood or bodily fluids.

“This is partly because HIV dies quite quickly once exposed to the air, and also because spilled fluids would have to get into a person’s bloodstream to infect them,” states a Project HOPEFUL publication.

If a child with HIV does fall down and get a bloodied knee or elbow, doctors advise people to use “Universal Precautions.”

“Dr. Alexander like to use this slide – and we’ve all stolen it – that says, ‘If it’s icky, sticky and gooey and it didn’t come out of you, don’t touch it,’” says Walsh.  Essentially, Universal Precautions advise against directly touching another person’s bodily fluids. “Something as simple as a paper towel or a band-aid is just fine for minor cuts and scrapes,” states the Project HOPEFUL resource. “Even your clothing is a barrier between spilled blood and your skin.”

The amount of virus in the blood also affects the threat of infection.  “If your viral load is zero, your risk of transmission is very, very low,” says Dr. Alexander.

For Jenni, all of this adds up to a very normal childhood.  She can play on the playground with other kids, join a soccer team, swim in a public pool, be a Girl Scout or ballerina – without endangering other children. “There is not anything she can’t do,” says Walsh.

Armed with this information, Sarah and Mark felt confident that they could manage Jenni’s condition.  But that was really a moot point for the Smiths.  “From the minute I met her…I was willing to do whatever she needed for as long as she lived,” says Sarah.

By adopting Jenni, the Smiths inadvertently became pioneers.  “Jenni was the first HIV-positive child adopted from India,” says Sarah.

With this decision, they also saved their daughter’s life.

According to From HIV to Home, which educates and supports adoptive families of children with HIV, half of all HIV-infected children in resource-poor regions will die before their second birthday.

Within even a month of coming home, Jenni showed a marked difference.  Within six months, she was walking and talking. “How much is that a result of medicine, of diet, of the love of two parents?” questions Dr. Alexander. “These are all essential ingredients for these kids.”

Had Jenni not received any of these ingredients, however, Sarah is certain of one outcome: “Jenni would not still be alive.”

Managing HIV – Things to Consider

 

In 2007, Sarah and Mark brought their daughter home.

At first, managing Jenni’s condition required a minor learning curve. “It was only challenging in so far as we had to figure out how to get her to swallow the most foul-tasting of the meds,” says Sarah.

In time, it has become a routine and fairly effortless part of their daily lives.

“It’s just a matter of taking medications twice a day and having blood drawn quarterly,” she says.

Jenni’s drug regimen targets the HIV virus with a combination of anti-retroviral medications.  Called “highly active antiretroviral therapy” – or HAART – the treatment keeps the virus from replicating in her blood. With HAART therapy, living with HIV has become much more manageable – and hopeful.

Some of Linda Walsh’s HIV patients are now in their early 20s and going off to college.  “Some of the young women have had babies of their own.  We feel a little like grandparents,” she says.  All of their babies are HIV-negative.

Although HIV treatment has become fairly straightforward, consistency is crucial.  If a patient stops taking their medication regularly, the virus can become resistant.

When that happens, the drugs stop working.

“For a family considering adopting a child with HIV, they will have to embrace the idea that medication adherence is probably the single most important factor in their kid’s health,” says Dr. Alexander.  “If you’re not a person who puts the toothpaste cap back on, this isn’t for you.”

That said, parents can – and do – make occasional mistakes without dire consequence.  “It’s more forgiving than that,” says Dr. Alexander. “If a kid gets something between 80 and 100% of their doses, they’re doing pretty well.”

For prospective adoptive parents, the cost of HIV treatment is another factor to consider. The cost varies based on the drug regimen.  “Some are (more affordable), some are still quite expensive,” says Dr. Alexander.  For Jenni’s medication, the Smiths pay about $30/month.

“Most families have insurance and insurance is very good about covering that,” says Dr. Alexander.  “That being said, if I counseled a family, one of the things I’d say is let’s sit down with your insurance and make sure (it covers the cost of treatment).”

A Teachable Moment

As with any adoption for a child with a special medical need, families should carefully consider what they’re capable of managing.  But managing the HIV virus itself is not necessarily the biggest issue to consider.

“The biggest challenge families face is everyone else,” says Dr. Alexander.

Although most have welcomed Jenni, some friends have dropped out of Sarah and Mark’s lives.  They’ve learned to be careful with whom they share Jenni’s status.

“The worst thing about having this virus is the stigma attached to it,” says Sarah. “That’s really what parents have to prepare themselves for.”

When disclosing, they also have to consider what Jenni would want.  “When we tell people she is HIV-positive, we’re telling something she may not want to tell people herself,” says Sarah.  But Sarah and Mark also feel Jenni has nothing to be ashamed of.  “For that reason,” says Sarah, “we’ve been mostly forthcoming.”

The Smiths see it as a teachable moment.  “We try to be educators,” she says.

In their community, the Smiths have become strong advocates for HIV awareness and adoption. Sarah serves on a parent advisory board for the Adoption Center.  And every three months, she speaks about raising an HIV-positive child on a panel at the University of Chicago.  “I think that’s really useful to people,” she says.  “They can ask us questions, ask what to expect.”

The HIV pediatric care team often visits churches and schools in the community as well.  “(We) share that there is a child among you with HIV – and this is what it means,” says Dr. Alexander. “The vast majority of people, given a little education, are very accepting.”

Growing Up with HIV

Now 4, Jenni is only beginning to become curious about why she takes medication – and others don’t.

For now, Sarah and Mark keep it simple.  They have explained to Jenni that people either take medicine when they get sick, or not to get sick in the first place.  “That’s satisfying her for now,” says Sarah. “As she gets more sophisticated, we’ll continue to supply her with more information.”

As Jenni grows older and more independent, Sarah and Mark know to prepare for issues other families have faced.  Sometimes, typical teenage rebellion expresses itself in refusal to take medication.

“You have to really plan for those years,” says Sarah.

They hope to have a strong support system to rely on. The Adoption Center at the University of Chicago offers one strong network of support, including a developmental psychologist who can help families like the Smiths work through those years.  “We’ve been doing this now in our clinics since 1990, so there’s a lot of experience,” says Dr. Alexander.  Through the years, he’s observed that most issues that arise have more to do with normal teenage behavior than anything else.

“Is it the fact that they’re adopted?  That they have HIV?  That they’re a teenager?  I feel like I’m living with a space alien,” he says parents will ask. “Mostly, it’s because they have a normal kid.”

“We just hope that she will be a good kid with a good head on her shoulders,” says Sarah.

Of that, Sarah feels hopeful. Parenting Jenni, regardless of the fact she has HIV, is the most hopeful thing Sarah says she’s ever done.

Dr. Alexander also sees a hopeful future for Jenni.

“Every day new drugs come along,” says Dr. Alexander.  “We have every reason to think she’ll do just fine.”

More than fine, even.

“She can do everything. She can get married.  She can have children.  She can be in the Olympics.  She can,” says Sarah, “do anything anyone else can do.”

Robin Munro | Managing Editor

Holt is currently seeking families for several children who are living with HIV in China. To learn more, visit our waiting child photolisting or contact Jessica Zeeb at jessicaz@holtinternational.org.

*The names in this story have been changed to protect the family’s identities, and to empower “Jenni” to decide with whom and how much of her story she wishes to tell.

Resources for Prospective Parents

University of Chicago Adoption Center: www.uchicagokidshospital.org/specialties/adoption

Project HOPEFUL: www.projecthopeful.org

From HIV to Home: www.fromhivtohome.org

AIDS Alliance for Children, Youth and Families: www.aids-alliance.org

Read another family’s story about adopting a child with HIV!

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