By Beth Anne Schwamberger

Chris and I have been matched with a 15-month-old boy in India! A lot has happened in the last couple of weeks. It’s been a whirlwind. The good kind of whirlwind that makes wheat fields look gorgeous and makes blossoms fly. The world is just full of more flowers and trees and life because of the whirlwind… I still look back at everything in absolute awe of God and how He has worked.

I am going to go on and on about our precious child. I have fallen in love with this little boy. I think everything about him is exquisite and wonderful, and I want to plaster his picture on billboards, have Chris write in the sky that he’s ours…..and announce it at the Super Bowl! I am so incredibly proud to be his mommy.

Sixteen days ago, Chris and I were thinking it would be years before we could bring a child home. We gritted our teeth and hunkered down for a really long wait. Then, on Thursday, January 12th, I saw a blog post from Holt on one of their “waiting children.” I love to check out these posts, share them on Facebook, and pray for these children to find families. This little boy tugged at my heart right away. I thought, “he would be a perfect fit for us, but he’s in India. We’re not old enough to adopt from India.”

I figured it was worth a shot, though, to check out India’s requirements again. I went to India’s Central Adoption Resource Authority website, and I couldn’t believe what I read. I almost fell out of my chair with happiness. India had recently changed their guidelines, so that now, married couples only have to be 25 years old to adopt, rather than 30! I contacted Holt, and asked, “Is this really true?! Seriously?! We can adopt from India?!?!” India is where my heart has always been. The orphanage in India changed my life. We love Thailand, and have learned so much about Thai culture in the time we were in the Thailand program, but let’s face it, God gave me a special place in my heart for India. One of the waiting child program staff emailed me back, and said, “Yes, it’s true!” She sent me all the information they had on this little boy, so we could begin to research his condition and decide whether or not we wanted to apply to be his parents.

Before we got “Hudson’s” information via email, I spoke with Erin from the waiting child program on the phone. She told me all about him, and I froze when she read the words: paralysis of lower limbs. “Oh, I said, so he will need a wheelchair…. ok.” She continued to talk about him, and even though my heart was sad that he might never walk, I never felt that he wasn’t meant to be our child. After I got off the phone with Erin, I took our dog Gus for a walk and thought about this little boy. I grieved for the things he might miss out on if he couldn’t walk, I grieved for him feeling different from his peers and struggling to do what came so easy to everyone else. This whole time, though, I felt God whispering to my heart, “He is yours, I’ll be with you every step of the way.”

Beth Anne's love for India and her desire to adopt from this country was inspired by a summer spent volunteering at an orphanage.

I had a lot of questions. As a military family, I wondered how we were going to give this little boy everything he needs. We move every three years. Can we guarantee that every location will have what he needs, that everywhere we go we can find a wheelchair friendly house and wheelchair friendly activities for him? And what about the specialists and therapies he will need? One by one, God answered every single question. I was amazed to discover what resources and specialists we have close to our little southern town. And all the other places we might go over the next 15 years have even more resources than we have here! We could be in San Diego – home of the Challenged Athletes Foundation. This organization is amazing – they provide special wheelchairs and other equipment for athletes with disabilities. They provide free mentorships for kids 8 and older. We could be in Quantico, close to D.C. We could be at Camp Pendleton, which is right between San Diego and L.A. We could be in Virginia Beach. The only location I had my doubts about was Camp Lejeune, NC. But the great thing about the military is they have the Exceptional Family Member Program. So basically, they’ll never station Chris anywhere that doesn’t have adequate resources and care for our child.

Even in our little town, there is horseback riding for kids with disabilities, and a plethora of swimming pools and beaches. Wheelchair tennis and basketball organizations are not too far away, and all the medical professionals we need to see are no further than 1.5 hours away. (Yes, I know this seems kinda far, but for a girl who has driven 14 hours in one day to visit family… this is a piece of cake! I just have to figure out how to make car trips fun for Hudson.)

Chris started cracking up when I told him about all of this stuff. He said, “You know, he’ll only be about 2 years old when we bring him home… I don’t think they’ll let him go horseback riding just yet.” Ok, good point, Chris, I guess I’m getting a little ahead of myself! All that to say, the more I researched, the more encouraged I was, and the more convinced I became that we could provide this little boy with all the resources, support, love, and encouragement he would need to lead a happy, fulfilling life.

Another amazing answer to prayer was how open Chris was to this little boy from the moment I told him about Hudson. Chris has been adamant that we would know who our child was through a traditional “match,” meaning we wait in line, Holt picks a child and says, he’s yours!” I, on the other hand, have been pleading with him to consider one of the waiting children for the past year. Amazingly enough, the two waiting children who had been most on my heart before Hudson both had some similar medical and physical needs as he does. I really feel that God used these other two children to prepare our hearts to be open to Hudson. When I told Chris about Hudson, I expected him to say, “absolutely not, we are not applying for a waiting child.” Instead, his reaction was, “OK,” and we both started talking about how we could adapt our house for a child in a wheelchair, and how we could give this little boy what he needs. There was definitely some blood, sweat and tears as I tried to get Chris to make a decision faster. Chris does not like to make up his mind quickly. It’s really a great balance to my “do-a-triple-back-flip-dive-into-the-deep-end” mentality. But I’m not gonna lie… sometimes his brain’s processing speed drives me completely coo coo for cocoa puffs! I would ask him like a used car salesman, “So what can I do to get a ‘Yes’ out of you today? How can I help that brain of yours along?” Chris responded by saying, “You can quit bugging me, because every moment you distract my brain, it will take me longer to decide.” Again, I think God was chuckling at me, thinking, “You can’t change his mind or heart, Beth Anne, that’s MY job!” After all of that, it only took him four days to decide. Wow, I am incredibly impatient.

“But do not forget this one thing, dear friends: With the Lord a day is like a thousand years, and a thousand years are like a day. The Lord is not slow in keeping his promise, as some understand slowness. Instead he is patient with you, not wanting anyone to perish, but everyone to come to repentance.” 2 Peter 3:8-9.

I know this verse is talking about God’s eternal plan for the universe, about saving people for His glory and about when Jesus will come back. But I also think it applies to the promises He writes on each of our hearts. God was not slow in keeping the promise to give us a child to love and care for. He worked everything out in His perfect timing. For those of you who are still driving the endless, circular and monotonous racetrack that is the waiting game, know that God will not be slow in keeping His promises to you too. I am amazed by the fact that last year, when Chris and I first started talking about adoption, our little boy was being born in India. God knew all along. It gives me chills. It takes my breath away. He had this marvelous secret for us. I can just see him waiting with anticipation for the day when He could reveal His plan to us!

Sorry, got sidetracked again. How could I not?! God is just way too cool. Ok, so on Tuesday, January 17th, Chris told me we could apply to be Hudson’s parents. By the way, 17 is a special number for us. It was Chris’ sports number all through high school and college, and on November 17th, 2003, Chris asked me to be his girlfriend. (He swears he didn’t plan it that way…. sure, sure, just like you didn’t plan to make me wait four days so you could tell me Hudson should be our son on the 17th too!) I wrote to Erin and she sent me all the questionnaires. I spent the next four hours pouring out my heart on those pages.

On Monday, January 23, Jessica from the Waiting Child Program, called to tell us that we were chosen to be Hudson’s parents! I cried. I was shaking. I couldn’t believe it was true. I’m still in shock. I feel like I won the lottery, but instead of winning a bunch of money (useless, right?), I won the gift of a beautiful and precious, smart and social, happy little boy. Wow, Chris and I feel so blessed. So now, we fill out a bunch of paperwork for India. Create a photo album and video to send to Hudson, and wait… It will probably be 6-12 months before we can go get Hudson and bring him home. Six months would be amazingly fast. The reason I even dare to mention six months is because supposedly, with India’s new and improved adoption system, things are supposed to progress a little faster, and kids with “special needs” are supposed to get expedited a bit. I’m not sure where Hudson would fall in this category. He is clearly healthy and happy, but he does have physical challenges.

Let me explain a little more about Hudson’s condition. I am still struggling to find the balance between what to share and not share. In his case, I’m going to share a lot of the physical stuff, because it will be very obvious, when you meet him, that he’s different in that way. I also want to share in the hopes that it might make other adoptive families more open to a child with “special needs.” I don’t really like the term, “special needs.” It kinda reminds me of kids making fun of other kids in elementary school and calling them “special.” I heard one parent refer to kids with disabilities as “exceptional children,” whereas normal kids were called, “typical.” And yes, I know that every child is exceptional to their parents and family, but for now, that’s the term I’m going to use: exceptional. I mean, really, the level of work and determination it will take Hudson to do the things that other kids can do without even thinking about it, really is exceptional.

Hudson was born with sacral agenesis, also known as caudal regression syndrome. This condition starts in-utero during the development of the neural tube, but it’s different than spina bifida. It can have a similar presentation, but its cause and what’s going on in the body are quite different. Fortunately, this condition does not cause hydrocephalus (build-up of fluid in the brain), as spina bifida can. Children with sacral agenesis have normal intelligence and are not at any increased risk for learning disabilities or ADHD, as is the case with spina bifida. Here’s what it can cause: absent or malformed sacrum (the sacrum is a triangular bone that has 5 fused vertebrae S1-S5… they don’t fuse until adulthood, and sits below the lumbar vertebrae and just above the “tailbone” here’s a link to a picture of it and definition: http://www.yourdictionary.com/sacrum

The two doctors who have reviewed his information for us, tell us that they do not think he will ever walk. They also say, “never say never, kids are amazing and always surprise us.” We’re going to give Hudson the best care we possibly can, and whatever his outcome and level of mobility, we’re just fine with that. We’re somewhat hopeful, because we’ve learned that walking depends a lot on hip movement and control, and he appears to have some level of this from the videos we saw. But who knows, it’s kind of fun to just be surprised by what he can do when we bring him home.

Ok, now that I’ve bored you with all of the medical stuff, I’ll just conclude by saying this: parenting this precious boy is going to be the biggest challenge of our lives thus far. We are ready! Well, as ready as any parent could even be…. We know there are going to be rough days, days where we are exhausted, and Hudson is exhausted, and we don’t want to see another doctor, and we don’t want him to have to go through another procedure. There will be days when we’re just downright discouraged. Days where we just ache for him to be like every other “typical” kid, not for our sake, but for his. But we’re counting on every single day with Hudson being an absolute blessing. We love this little boy with everything we have. We love his fascination with the world and people around him, his enjoyment of being held, his dark curly hair, his sensitive brown eyes, and his round smiley cheeks. We can’t wait to discover a million other things that we love about him. We have a conviction that cannot be shaken that God meant for him to be our son. We will not give up. We will not dwell on the hard things. We will trust in God to walk with us every single day.

Holt looks forward to sharing an updated story (and photos) about this family once they have returned home with their son!

Hudson has found his family!…..but Donald from China still needs a family.  Read (and share!) his story…..click here

by Robin Munro, Senior Writer

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

The Robacks' 2010 Christmas photo.

When Dr. Ken Alexander first met Sachi, 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 Sachi’s side were her new adoptive parents, Terri and Brad Roback. Turning to the Robacks, 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 Robacks 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 Sachi’s hopeful outlook.

Twenty years ago, her outlook would not have been quite so hopeful. Born HIV-positive in India, Sachi had never received treatment for her illness, allowing the virus to replicate to dangerous levels.  As soon as possible, Dr. Alexander placed Sachi 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, Sachi has not only made it to her second birthday, but her third and fourth.

“Today, if you meet Sachi, 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 Terri.  “I would encourage anybody to adopt an HIV-positive child.”

Adopting Sachi

Four years ago, Terri and Brad 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 Terri and Brad 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, Terri and Brad 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 Robacks 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 Terri. “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 Terri.  “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 Terri.

“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 Sachi, 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, Terri and Brad felt confident that they could manage Sachi’s condition.  But that was really a moot point for the Robacks.  “From the minute I met her…I was willing to do whatever she needed for as long as she lived,” says Terri.

By adopting Sachi, the Robacks inadvertently became pioneers.  “Sachi was the first HIV-positive child adopted from India,” says Terri.

With this decision, they also saved Sachi’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, Sachi 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 Sachi not received any of these ingredients, however, Terri is certain of one outcome: “Sachi would not still be alive.”

Managing HIV – Things to Consider

After meeting their daughter in India, Terri and Brad decided to give her the name Sachi Tulip. Sachi means “grace” in Sanskrit.

In 2007, they brought her home.

At first, managing Sachi’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 Terri.

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.

Sachi’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 20’s 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 Sachi’s medication, the Robacks 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 Sachi, some friends have dropped out of Terri and Brad’s lives.  They’ve learned to be careful with whom they share Sachi’s status.

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

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

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

In their community, the Robacks have become strong advocates for HIV awareness and adoption.  Terri 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, Sachi is only beginning to become curious about why she takes medication – and others don’t.

For now, Terri and Brad keep it simple.  They have explained to Sachi 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 Terri.  “As she gets more sophisticated, we’ll continue to supply her with more information.”

As Sachi grows older and more independent, Terri and Brad 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 Terri.

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 Robacks 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 Terri.

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

Dr. Alexander also sees a hopeful future for Sachi.

“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 Terri, “do anything anyone else can do.”

Holt’s waiting child program is currently seeking adoptive families for two young girls in Southeast Asia who have tested positive for HIV. Click here for more information.

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

In the spring issue of Holt magazine, Minalee Saks, executive director of Birth to Three, described a workshop she led last February – in India. Birth to Three is a non-profit organization in Eugene, Oregon that provides parenting education and support for families of young children. Organized by Holt, the workshop drew 19 social workers from six countries for a four-day training in Birth to Three’s “Make Parenting a Pleasure” curriculum.

At the end of the workshop, the participants returned home to put Minalee’s practices to work – making the act of parenting both more enjoyable, and more effective, for families from Ethiopia and Uganda to the Philippines and Vietnam.

In Vietnam, the two social workers that participated are making quick progress.

With the lessons still fresh in her mind, Holt social worker Nguyen Thu Ngan led a one-day training session for fellow social workers and staff in Vietnam. In turn, the Holt-Vietnam staff will soon begin training families we serve throughout the country – beginning with 50 struggling families we support in the north, near Hanoi. The children of these families are all in preschool, and all at risk of neglect or separation from their parents. Through basic support services, we are helping these families give their children a safe, stable home. And now, thanks to Minalee Saks and Birth to Three, we can help them become better parents for their children as well.

Read about Minalee’s time in India….

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