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ADOPTING MAISHA

By The Time They Learned She Might Be HIV-Positive, It Was Too Late: The Baby Girl From Kenya Had Already Won Her New Parents' Hearts.

 

 
June 6, 1999

Less than a month before Rebecca Maisha came into our lives, my wife, Debbi Friedlander, and I had discussed adopting again. The arguments against it were winning out. Our son, Joshua, was 6 years old, no longer in need of constant supervision, and we were enjoying our renewed sense of freedom. Adoption, we knew from experience, is expensive and takes determination, along with a willingness to deal with a lot of bureaucrats. Our plan was to enjoy the mobility and opportunities for global adventure that we had as a three-person family.

But life doesn't always go according to plan.

That year, 1996, we were living in Kenya, the East African country known to most Americans for its game parks and tropical beach resorts. I worked for a study-abroad program, shepherding 24 American college students from various schools through a 16-credit "life and culture" course each semester. As my second semester was ending, we headed from our apartment in Nairobi to the coast to meet the students, who were converging from all over the country to report on their four-week, independent-study projects.

Among them was Terri Winning, a student from Missouri who had done her project in a Nairobi hospice for HIV-positive children. She was having a hard time saying goodbye to the children at the hospice; she had gotten close to them and to one little girl, named Helen, in particular. Terri knew that Joshua was adopted, and she asked us if, just maybe, we might be interested in adopting again. Some of the children, she explained, were "turning negative" -- they tested positive for HIV antibodies at birth, but now signs of the virus were no longer in their blood -- and they needed adoptive parents. We didn't really understand the medical aspects of what she was talking about, but we were curious enough to agree to visit the hospice with Terriwhen we got back to Nairobi.

Two days later, our group boarded the colonial-era night train that wends its way inland from the coastal city of Mombasa. We arrived home the next morning, and that very afternoon, Terri took us to the hospice, called Nyumbani -- Swahili for "home." It is just outside Nairobi in a town called Karen, named for the author Karen Blixen, who lived there and used it as the setting for Out of Africa.

Terri introduced us to Helen, her favorite. Sadly, Helen's latest tests still showed she was carrying the virus that leads to AIDS (she has since died). But tests on three babies had just come back negative, the matron, Sister Tresa Palakudy, told us happily. Wouldn't we like to meet them?

The room was home to more than 20 HIV-positive children ranging in age from a few months to 12 years old. Two of the three babies were wriggling around on a gray gymnastics mat, and Debbi went over to play with them. Then a volunteer walked in with the third. It was Rebecca, 6 months old. The volunteer handed Rebecca to Debbi, and neither could stop smiling. The connection was instant. I took a turn holding Rebecca, and I, too, felt Rebecca's charm, but I also felt awkward at the matron's matchmaking. Debbi's resistance to another round of motherhood was melting, though not quite yet to the puddle stage.

Wouldn't we like to take Rebecca home for the weekend? asked the matron.

We said no, that first time, but we thought all week about the little girl. Joshua had been asking for a sister on and off for three years. He had even invented a fantasy friend a couple of years earlier, we remembered, a girl he would talk to in the back seat of the car. Oddly, he had named her Rebecca. The next weekend, we visited Nyumbani again, and again we were asked the question. This time we said yes, we would take Rebecca home for a visit.

We had never had a baby before -- Joshua had been 2 1/2 when we adopted him -- so we did not realize that Rebecca was small for her age, about 10 pounds. The matron found a blanket, a few baby clothes, formula, and some diapers that had been donated to the hospice. She gave us a handwritten note entrusting this infant to our care for the weekend, in case the police, who often erect checkpoints on the outskirts of the city, had any questions. When we pulled into our driveway half an hour later, smoke was seeping out from under the hood of our car. We had blown a gasket and were immobilized for the rest of the weekend.

Joshua, who had been at school that day, was thrilled with the bundle we had brought home. He hid his smiling face behind a curtain at first, overcome by the pleasure of this long-anticipated sister. Rebecca slept easily each of the three nights and was content to gurgle and smile as she was passed to various loving arms through our first weekend together.

Monday morning, we called the director of the hospice, the Reverend Angelo D'Agostino, an American Jesuit (and a psychiatrist) who has worked in Kenya for more than 20 years, to explain that our car was in the shop and that we couldn't return Rebecca on time. We were surprised by his nonchalant response: Instead of worrying about how to return Rebecca to the hospice, he suggested we might want to start making adoption plans. He was right, we realized: What had been an inkling all weekend suddenly sank in, and we knew we were smitten. From that moment on, we thought of ourselves as the parents of Rebecca, whom we would eventually call by her middle name, Maisha.

Interracial adoption is technically not legal in Kenya. But Nyumbani had been able to place black Kenyan children with white parents before, because, we were told, the stigma attached to formerly HIV-positive children made them especially hard to place. The next morning, I took Rebecca to our pediatrician, Dr. Stephen Muhudia, for a physical. He examined her and ordered a blood test to look for a variety of things, including HIV. I took her to Nairobi Hospital, where she gave a blood samplewith barely a whimper.

Brendan Everett, a premed student from Scituate volunteering at the hospice, had told us when we took Rebecca home that he wasn't totally confident about the negative tests she'd gotten and cautioned us not to get too attached. But it didn't really occur to me to worry. I was getting great pleasure from carrying this wonderful baby, tied to my front with a colorful cloth, through the streets of my Nairobi neighborhood, drawing smiles and approving glances from passersby.

Later that week, Dr. Muhudia gave me the test results over the phone. He has a soft and reassuring voice, but it didn't help: The news was bad. Two different technicians had tested Rebecca's blood independently, and both tests came up HIV-positive. My mind raced. But it was too late for caution. We had opened our hearts, and she was part of the family.

That telephone call began our crash course in pediatric HIV infection. Brendan Everett gave us articles to read, and we met with Father D'Agostino for counseling. The standard test for HIV, we found out, is the ELISA. It is the cheapest to administer, but it is inconclusive in infants, because it looks for antibodies and not the virus itself. If an adult has the antibodies, he or she must have the virus, but that's not true of babies. Babies born to HIV-positive women test positive for theantibodies, even though only 25 percent of them turn out to be carrying the virus. It can take as long as 12 to 18 months for the antibodies carried by the noninfected babies to clear from the blood, at which point they "turn negative." In fact, they never had the virus, only the antibodies responding to the virus in their mother's body.

The chances that Rebecca might still turn negative were actually better than 75 percent, we were told, because she obviously wasn't in the category of infants with a "rapid disease progression," who usually die in the first months of life. There was cause for concern, but we decided to go ahead with a juvenile court date to become Rebecca's legal foster parents.

Our family was preparing to come home to Amherst for my summer leave. But could we bring Rebecca? One of the questions on the visa form was whether she had any communicable diseases. Since she had been in an AIDS hospice, the American embassy required verification that she was HIV-negative. That meant another round of tests, since the last two had come up positive.

As it happened, a Kenyan scientist named Moses Otsyula had just returned to Nairobi after completing his postdoctoral work at the University of California and was working with the children at Nyumbani. Dr. Otsyula had come home to the front lines of the fight against AIDS, which is ravaging an already suffering continent, and was setting up a laboratory at the Institute for Primate Research, founded by paleontologist Richard Leakey.

Dr. Otsyula had access to equipment that could look beyond the antibodies and actually test for the virus. He offered to test Rebecca's blood to determine conclusively whether or not she had the virus. We took Rebecca back to Nyumbani, where the matron, who is a nurse, drew blood. We were shocked by the laxness surrounding the drawing of blood from an HIV-positive patient: Nobody wore rubber gloves, and although Rebecca's screams reverberated off the concrete walls while the nurse was tryingto find a vein, she went about her business unperturbed. The three of us proceeded from there to the Institute for Primate Research, in a forest on the edge of the Nairobi National Park, to deliver the vial.

It was early June, and there was not much we could do but wait. And wait. Two weeks passed, and there were still no results. Debbi and I started smoking cigarettes and had to gird ourselves each time the phone rang. What could be taking so long? We weighed over and over in our minds whether a longer wait was good or bad, much like trying to figure out the deliberations of a jury.

We knew Dr. Otsyula was doing a "viral culture test," which involved incubating white blood cells for several weeks in order to detect any virus within them. With each passing day, we figured, no virus had appeared yet, so that must be good. We also knew that he was doing a chemically based polymerase chain-reaction test, known as a PCR, and that he must have those results in hand by now. Why wasn't he sharing those with us? We didn't want to bother Dr. Otsyula unduly, knowing that he was busy and that Rebecca was only one of thousands of children caught up in the maelstrom of this terrible disease. Just getting through on the phone was difficult, and when we did, the word was that there was still no word. The feeling of helplessness washard to bear.

Rebecca had a persistent cough but otherwise was healthy and energetic and by now was an adored member of the family.

At the end of June, our friend Gina Simm and her 12-year-old son, Errol, came to visit us from Amherst, arriving in the midst of our slow-motion crisis. We took them on a tour of the Nairobi National Park, and I was acutely aware that a dish of Rebecca's blood was sitting in a lab not a mile from where we were passing. I prayed that nothing was growing in it.

That evening as I was reading Danny the Champion of the World, a Roald Dahl book, to Joshua, the phone rang. Rebecca was sleeping peacefully under her mosquito net. Debbi answered the phone downstairs, and it was Dr. Otsyula. I could hear the pain in Debbi's voice. My heart sank. I hugged Joshua and told him Rebecca might have to go back to the hospice. The tests had come back positive. "You might want to think about getting another child," Dr. Otsyula told Debbi.

That night was one of the longest of my life. We cried as we imagined returning Rebecca to Nyumbani. I sat and stared at her for hours, wondering why fate had dealt her such a rotten hand. Then, as I lay in bed, something clicked. "We're going to fight this thing," I said to myself. If sticking by Rebecca meant having to grieve the early death of a beloved child down the road, then so be it. The next morning, I called Marsha Von Duerckheim, who headed the consular section at the American embassy.She listened compassionately as I told her that we had gotten bad news. She told me that Rebecca would be denied a visitor's visa because of her diagnosis -- but that she was entitled to an automatic appeal. If I could show that I was working and that wehad concrete plans for returning to Kenya, Von Duerckheim said, she would personally process a visitor's visa for Rebecca. Eventually, we could even adopt Rebecca and bring her to the United States if our insurance would cover her medical costs.

With that, hope started to dawn in our family. We realized that we had options. Friends listened to our news and brought us flowers. Now and again, Debbi and I broke down in tears. On the whole, we maintained the composure required of parents. Though the thoughts behind them were appreciated, the flowers made Debbi angry; they made her feel as if she was at her daughter's funeral. We needed to get proactive, so we reached out to our pediatrician, Dr. Muhudia, for advice. He pointed out that, in addition to love, the most important thing for an HIV-positive child is to stay in an environment that is as germ-free as possible. The better and more personal Rebecca's care, the better were her odds of living longer. We were going to do everythingwe could to keep her with us.

Before we could get the visa from the American embassy, Rebecca had to have a passport. A guardian angel in the Kenyan passport office -- without a bribe -- saw to it that Rebecca got traveling papers in less than 24 hours, an almost unheard-of feat. Marsha Von Duerckheim was as good as her word, and we had the visa the next day. A huge load was lifted. Grief actually seemed to transform itself into joy as we realized that we wouldn't be separated from our little girl. We arranged for Rebecca and me to fly home ahead of the rest of the family. Then we went with Gina and Errol on a five-day road trip to Marich Pass, a desolate but beautiful area of western Kenya.

Rebecca was thriving on all the attention she was getting and was trying to stand up. We had to give Joshua and Errol, who loved playing with her, a stern lecture about what to do if Rebecca should fall and bleed: "Stay away, and call an adult!" The two boys handled our family's emotional roller coaster with amazing maturity, asking questions and listening carefully to our explanations.

We decided not to use latex gloves when changing Rebecca's diapers, opting instead to continue making sure our hands were free of cuts and to avoid contact with Rebecca's bodily fluids. Contracting the virus, we knew by then, is a lot harder than is commonly thought.

When we got back to Nairobi, I met Dr. Otsyula at his lab, and he gave me some encouragement. Dramatic strides were being made in fighting HIV, he said, especially in young children. It was the summer of the international AIDS conference in Vancouver, and press reports were filled with new hope. Dr. Otsyula gave me the names of his US colleagues who could give me the latest information on pediatric HIV and told me to get a test that would measure the amount of the virus Rebecca was carrying. When we arrived in the United States two days later, I made an appointment at a pediatric AIDS clinic in Springfield, and once again told our story to a nurse and then a doctor. Rebecca had a checkup, and blood was drawn. We would return in two weeks to get the results and discuss their significance.

By now, I had grown accustomed to the idea that Rebecca was HIV-positive. But my education about the fears and prejudices, my own included, surrounding this disease was just beginning. For starters, exactly whose business was our baby's HIV status? Did we have an obligation to tell parents of children she played with that she was carrying the virus? Since I had shared our story with a number of friends, the news was out -- and that kind of news travels of its own accord.

Being public about her diagnosis made sense for a number of reasons, we decided. In some small way, it would sensitize people who might otherwise not have given much thought to HIV. I also knew that this would color and, in many cases, dominate the way people thought about Rebecca, and I knew this wasn't fair. I had gotten to know a lot of HIV-positive children in Nairobi, and many were outwardly healthy, living 10 or more years with only minimal medical intervention.

Friends of mine in New York, both scientists, with a baby who was a month younger than Rebecca had no reservations about letting the children play together when we visited. But we also had acquaintances with young children call off a breakfast date at the last minute, saying they just didn't want to take any chances. Friends, we figured, would eventually allow that aspect of Rebecca's identity to recede.

Debbi's parents, who live in Weston, opened their hearts to their new granddaughter and helped me get medical advice. In the meantime, Debbi and Joshua returned to Massachusetts. On the appointed day, Debbi, Rebecca, and I went to meet Dr. Barbara Stechenberg, who runs the clinic that sees HIV-positive children at Baystate Medical Center in Springfield, where Rebecca's blood had been drawn two weeks before. We were here to discuss Rebecca's "viral load" and what it meant; Stechenberg closed her door. And then she gave us better news than we had even dared to imagine: Rebecca's viral load was zero.

The technicians hadn't found any virus at all in her blood, Stechenberg said. Maybe a mistake had been made at Dr. Otsyula's lab in Nairobi, but whatever the cause, there was good reason to hope that Rebecca was, in fact, HIV-negative. We drew more blood. The next round of tests would take several weeks, but if they confirmed the earlier tests, we could be very confident of their accuracy, Stechenberg said.

A strange combination of distrust and giddy relief set in. The letter with the results of the second round of tests didn't reach us until November, after we had returned to Nairobi. By this time, Rebecca, nearing her first birthday, had already taken her first steps. Our nicknames for her included "Determinencia" and "Exuberencia" because of her cheerful yet powerful will. The tests still showed traces of HIV antibodies in Rebecca's blood, but six different tests, including a viral culture, had not found any virus. She was virtually in the clear.

It would take a year for the adoption to become final in Kenya. During that time, we kept in touch with the folks at Nyumbani. Debbi often volunteered at the school there and sang songs with the children. Rebecca continued to grow and was a vibrant player in the kids' scene at our compound in Nairobi, an international group that hailed from Somalia, Sudan, Angola, Sweden, and Switzerland. She had a little plastic car, foot-propelled, on which she would come tearing around the corner at the bottom of a hill, seemingly oblivious to danger but always managing to stay upright. Fearless in the pool, she became something of a swimming prodigy. In the summer of 1997, on our way home to visit the Amherst-Northampton area, we stopped in Holland. Onrented bicycles, we explored The Hague, with Debbi and Josh on separate bikes and Rebecca in a seat attached to my handlebars, hardly able to contain her delight at being on the move.

In November 1997, 11 days shy of Rebecca's second birthday, the adoption became final; our daughter was truly ours. At the same time, I asked Caroline Matsalia, the social worker at Nyumbani, how I could find out more about the circumstances of our daughter's birth. She placed a call to the Child Welfare Society of Kenya, the agency through which Rebecca had come to Nyumbani, but her conversation with the caseworker there made Caroline uneasy about a possible bureaucratic challenge to the adoption. She advised us not to pursue the matter, and we agreed.

But the following June, when we had decided to move back to Massachusetts, I brought up the question again. Debbi and Joshua had already left Kenya and were busy setting up our new lives in Amherst while Rebecca and I waited for her visa to be processed. On a visit to Caroline, I asked if we could try again to trace Rebecca's background. I wanted my daughter to know, when she grew older, as much about her origins as I could find out.

Caroline called the Child Welfare Society again, and this time the caseworker invited her to come by to review the records. I went with her, and we got the name of Rebecca's birth mother. But the normal intake documents couldn't be found. This set off a week of detective work in which Caroline and I followed up skimpy leads that took us all over Nairobi. We found the orphanage where Rebecca had been admitted when she was 2 days old.

Caroline and I followed the trail to Sheria House, where civil records are kept for Nairobi Province, and then to the Pumwani Maternity Hospital. We learned that Rebecca's birth mother had come to the hospital under the auspices of the Good Shepherd Karibu Centre, a Christian crisis center for women. There, Caroline and I were greeted at the door by a soft-spoken young social worker who had been a classmate of Caroline's. Theresah Akwareh knew Rebecca's birth mother and had fond memories of her. She had since married and was living in another city, Akwareh believed, and had last come back to visit the center a year earlier. She left behind a photograph of herself, which Akwareh gave us for Rebecca to have.

She also gave us a copy of the intake form that describes the circumstances under which Rebecca's birth mother arrived at the center. I put that document aside for Rebecca to investigate someday, along with information that will allow Rebecca to find her large extended biological family if she wants to. We left photos of Rebecca there, in turn, and I wrote a letter to Rebecca's birth mother, which Caroline and Akwareh are still hoping to hand deliver, inviting her to contact us. The sad truth is that she may not live long enough to meet Rebecca as an adult. Rebecca, we had every reason to believe, escaped the HIV virus. Her birth mother did not.

There were no more blood tests for Rebecca until last June, when we were moving back to the States and bringing our daughter on an immigration visa. I hated the idea of getting her tested. The memories flooded back: I heard again Dr. Muhudia's gentle voice bringing bad tidings. It seemed that every time I expected bad news from a test, I got good news, and when I was expecting good news, I got bad. But the visa requirements were very rigorous. A photo had to be attached to the form; we had togo through an embassy-prescribed doctor; and the results would be reported directly to the embassy, because people have tried to fake their HIV status.

It took only two days this time, but phoning to get the results was an emotional ordeal. I smoked a couple of cigarettes to steady myself before making the call. The news was good: Rebecca Maisha, then 2 1/2, had cleared the remaining HIV antibodies from her blood.

Debbi and I gave Rebecca the middle name Maisha soon after she first came to live with us. It is a reference to the month of May, when our lives joined paths, and it is the Swahili word for "life." Maisha is what we call her now, and anyone who met her would agree that she is certainly full of life. It was an "unplanned adoption": One day we were a three-person family, and presto, five days later, we were four. When our family expanded, we didn't know that a deadly virus was going to take us through such depths of anguish and heights of relief.

Things have turned out well, so far, for Rebecca Maisha, and I am forever grateful to whatever higher powers are watching over her. But her situation brought the impact of the global AIDS crisis home to us on a very personal level. The statistics are staggering: The World Health Organization estimates that, as of last June, 440,000 children in Kenya alone had lost one or both parents to AIDS. Most of the AIDS orphans don't have the virus themselves, but the stigma of having lost a parent to the disease often puts them at risk of succumbing to neglect.

The people at Nyumbani have started a small but growing effort to address this seemingly intractable crisis. Since we first went there three years ago, they have built a school, a playground, and several small home-style buildings, each with a house mother. Beyond the vegetable garden is a cemetery where wooden crosses mark the passing of the children who lived out their short lives at the hospice.

Father D'Agostino, it seems, is a skilled fundraiser. The Italian and Japanese governments have made sizable contributions to his hospice. Former Senator Dennis DeConcini of Arizona sits on his board, and a picture of Father D'Agostino shaking President Clinton's hand adorns a wall at the orphanage. The hospice has a Web site (www.nyumbani.com) and a steady stream of volunteers.

With a lab on site now and better testing equipment, they know sooner which children are infected with the virus and which are only testing positive for antibodies temporarily inherited from their mothers. That means they are admitting fewer babies who will eventually "turn negative," and the social workers are turning their attention from finding adoptive homes for those children to setting up foster-care situations for the children known to be infected. Caroline Matsalia has initiated a "Lea Toto" (Raise the Child) program as part of a campaign to promote understanding of pediatric AIDS. They can only begin to address the magnitude of the task, but it is a crucial beginning.

My daughter was one of the lucky ones: A healthy young American now, she no longer qualifies as a poster child for this global tragedy. But if her story prompts readers to remember the children who will not escape, telling it will have been worthwhile.

All articles © Eric Goldscheider

(413) 835-1248 - eric.goldscheider@gmail.com