Barney The Bear

Corine got tickets for all the creche kids to see South Africa's first-ever (or fourth, depending on which sign you believe) appearance of Barney, "that purple bear," as she called him. It was at the theme park Gold Reef City, a nightmare only in that there were hundreds of other children who were pretty much completely indistinguishable from our group. It wasn't so bad at first, because all the other buses of kids unloading in the parking lot got off with standard elementary school field trip mechanisms in place, such as matching smocks, bright shirts, group leashes, or some sort of buddy system at the least. But then the generous geniuses running Gold Reef City decided to hand out white Barney t-shirts to every single child -- a perfect storm.

A major portion of the day was spent in the bathrooms. Our kids would all pee with the stalls open, and when we requested that they please wash their hands, they stood in line to be boosted to reach the soap and water, splashing and giggling and then going to the back of the line again until we caught on. Between their giddy excitement, free sugar, and overstimulation, and our not knowing or properly pronouncing their names, it was a miracle we left with all our own children. More than once throughout the day, we would spot a small quiet child waiting patiently in line with our group for a ride - a dead giveaway that she did not come from Sparrow. We would tote her around, shouting "This one's not ours," until some adults would recognize her and then scold her for their negligence. Our kids were also frustratingly fond of impulsively darting into crowds, spotting a dragon ride or bumper cars, and running for their lives.

One interesting phenomenon was that the Sparrow children seemed to have never seen real live white kids before. They have been around plenty of white adults (though they still love stroking my unfamiliar hair over and over) and watch enough American movies and television to know white kids exist. But one of my girls simply walked up to a small blond girl just her height, peered into her eyes, and then cupped her cheek in the palm of her hand. They just stood there gazing at each other, as if madly in love, until rent apart by the girl's mother, who yanked her daughter's hand and barked, "Let's go!"










At the end of the afternoon, the buses were late picking us up, and we had to kill an hour in the parking lot keeping children from flinging each other into traffic. Once the novelty of our digital cameras wore off, we let them climb all over us, do our hair, show us tricks. We led them in all the playground games we could remember, then started making them up. At one point a schism broke spontaneously into a rousing rendition of "Happy Birthday," which I somehow never recognized before as lacking both a beginning and an end.


Here is a poorly lit montage of singing and dancing:


Now watch kids go round and round on rides:

The Deep End

The kids only get to go on outings outside the orphanage if there are enough adults around to take them. In December, Corine took a small group to look at all the Christmas lights and decorations. They got so excited, they were cheering at every traffic light because they thought they were seasonal, too. As Corine put it, they don't get out much.

So we took Cluster One to a very nice public swimming pool in a nearby suburb. You know times have changed when suburban parents allow their kids to swim in a pool with 20 AIDS orphans. The pool probably knows Sparrow, and the families may or may not have recognized the van. Regardless, the kids did look like ragamuffin orphans, wearing ill-fitting “bathing costumes”, or t-shirts because they don’t own a suit. Many appear ill and almost all are underweight. And none of them could really swim.

We accompanied Caroline, a volunteer who is allergic to chlorine, and Mama Gogo, head of the cluster, who does not swim. Once we got everyone changed and were perched on the edge of the pool ready to plunge in, Gogo told us the youngest had never been swimming before. Then we asked how many others had never been swimming before, and one by one about half the group raised their hands. Some were dying of excitement to get in, while others seemed scared to death. There was a kiddie pool but the smallest ones refused to swim there, because they wanted to stay with the other children, petrified and panicked as they were. One girl, Phindile, visibly trembled with fear and clung to the wall even while obstinately refusing to get out of the pool. But by the end of the day, we got everyone in the water, everyone having fun, and everyone at least making the motions of a flutter kick.


The children's wiry delicate frames get so cold so quickly, and it was a breezy afternoon. They started shivering right away and after just 10 or 15 minutes they were climbing out one by one to lay out on the sunbaked concrete deck. They looked like turtles to me, all lined up under towels for shells, scrawny and vulnerable. When taking individual children for a "swimming lesson" across the width of the pool, you could feel the shivering of their bony bodies and the palpitations of their racing hearts -- probably equal parts cold, excitement, fear, chronic lung disease, and deconditioning.

Food For Thought

There are many fat, happy children in the HIV clinic, but there are also many sad stories. Kemi saw a 13-year-old boy who had never been told that he is HIV-positive. His parents do not believe he is old enough to know the truth, and although the legal age for disclosure here is 12 years old, the doctors have agreed to let them tell him in their own time. He has grown up thinking all his medications are just for TB. And the clinic shows no indication that it is specifically an HIV clinic, for fear of stigmatization.

I saw the young mother of a beautiful 28-month-old girl, who looks to be no more than 12 or 18 months. Her CD4 count is still relatively high (29% of expected for her age), and with that news the mother shouted for joy, "Yesss, I am doing a good job!" The problem is that the child needs to be started on antiretroviral treatment, because though she has survived this long with only treating infections such as TB and pneumonias as they arise, the sooner ART is started in children, the longer death can be delayed. Although the mother herself is HIV-positive, she is well enough to not have started treatment yet either. At the doctor's pronouncement that it was time to start her baby on ART, the mother shook her head and burst into tears. She does not want her to start treatment, because she feels her daughter is developing well without it. She is afraid because she believes the medications are poisonous for children, and says she has seen their effects with her own eyes in neighbors' children. After a bit of ineffectual back-and-forth, the doctor finally refers her to the on-site counselor who has the time to discuss all the issues with parents. It is hard to sit by and watch, because my instinct was to shake the mother to her senses and yell, "Yes, there are side effects, but the alternative is a slow, agonizing, and inevitable death for your baby." Instead I just handed her a Kleenex and patted her on the back.

There are many parents at the clinic who deny they have HIV, even if all their children have been born positive. They refuse testing or lie about having been tested in the past. Even if they take very good care of their children and stay on top of all the medications, they believe their child acquired the virus through some other means, like at the hospital or from an unknown episode of rape or sexual abuse. Although sexual assault and abuse is a frequent mode of transmission for many children, including several of the children at Sparrow, the vast majority of these cases are vertical transmission - the virus passing from an HIV-positive woman, who may or may not know her status, to her baby in utero, during birth, or while breastfeeding. Breastfeeding itself is an incredibly controversial issue, since the virus is known to be passed this way. Formula feeding in theory should prevent these cases, but formula is expensive and often inaccessible, as well as culturally unacceptable to many people. Even if the mother is willing to exclusively bottle-feed her baby, she often must breastfeed in front of her husband or mother-in-law to avoid being beaten or kicked out. And it turns out that the worst combination for infants, in terms of risk of acquiring HIV, is mixed formula and breastmilk feeding. (One theory is that early food or formula causes damage to the infant GI tract, allowing easier entry for the virus whenever the baby receives milk from the mother.)

In a lecture with a dietician, we got to see one of the food baskets that are handed out every month at the clinic. A foundation donates 100 parcels every month to the clinic to distribute to the most needy families, as determined by staff dieticians. It includes a bag each of mealie (corn flour), sugar, beans, and lentils, with four small cans of fish and two jars of a high-fat, calorie-dense, fortified powder made from peanut butter and soy. There is also ample soap and toothpaste. The food often goes to feed a family that includes not only the sick children and parents, if they are alive, but grandparents, aunts, uncles, cousins, and whoever else may be around. It is really only enough food for a few semi-nutritious meals, if that. The provincial government provides mothers of HIV-positive infants with 6 tins per month of Nestle NAN milk powder (known as “HIV formula” here), about half what is needed to feed an infant for a month. There is also a small grant provided, and there are stories of women who intentionally do not take antiretroviral medications while they are pregnant, so that their baby will be positive and they can qualify for the grant.












The South African government, specifically the current president, the health minister, and ANC president Jacob Zuma, have notorious reputations among the local and international health communities for their stances on HIV and AIDS treatment and prevention. Zuma, leading contender for the next presidency, for example, has been quoted as advising women who have been raped to take a shower afterwards in order to prevent HIV. Embattled Health Minister Manto Tshabalala-Msimang routinely advises natural foods such as garlic and lemons to prevent the development of AIDS. And Thabo Mbeki, the outgoing president, has stated that HIV is not the direct cause of AIDS. His beliefs led to the delay of the roll-out of publicly available ART for years, finally made officially available in 2004, too late for many children and adults in this country. Such attitudes are incredibly frustrating for physicians here, because many people who may not have other sources of information incorporate these stances into their belief systems, and go against the advice of their own physician or pediatrician.

Straight For The Jugular

Several days per week we attend the pediatric HIV clinic at Bara, the behemoth hospital on a former army barracks in Soweto. (See attractive exterior at left.) On Fridays there are about a dozen other medical students there, which has been very interesting for us. Med students here complain about many of the same things we do -- long hours, scut work, unfair treatment, administrative problems. The whole "Humanism in Medicine" movement has yet to evolve here, evidenced both by the students' attitudes and behaviors towards patients, and physicians' opinion and treatment of students. They definitely get a busy, hands-on experience when they rotate through this hospital, however, which cannot compare even to some of my classmates' hectic experiences at places like Harlem Hospital.

I was sitting in on a visit with a 2-year-old girl and her teenaged father. The doctor said she needed to draw blood, and one of the students I was with jumped up and said he would do it. He then asked the father to leave the room, had his classmate pin the baby down, and proceeded to draw straight from the brachial artery. I was confused because they only needed routine bloods, and he had not even attempted to look for an accessible vein (which is both safer and less painful for the patient). When I asked whether this method was routinely used, both students and teacher replied that they generally go straight for an artery in any child age 3 or younger. In fact, the physician joked that she tends to go straight for the jugular vein in this age group. Later, when Kemi and I asked the resident Sparrow physician about this, he was similarly shocked and said he always attempts a vein in the arm or hand before resorting to other routes. As I have said though, we have never seen him miss a blood draw, in any age and under any circumstances.

We have also gotten to see some of the inpatient wards, which are nothing short of heartbreaking. Each hallway contains glass-enclosed rooms with row upon row of metal cribs containing wasted, desolate, dying babies. Many young mothers were at the bedsides of the healthier children, feeding them and chatting with each other. We even saw one father playing with his infant daughter and feeding her a bottle. But in other rooms there were no parents, who likely are already dead, and the babies lay on urine-soaked cloths, ribs showing, alone and too weak to look around or even to cry.

Perhaps the most poignant moment to me was when the head clinic physician described a visit to New York City in 1998. By that time, ART was already widely available in the States. She said she looked around the clinic there and saw all these hardy, thriving kids on ART. Next I thought she was going to say how amazing it was to see the transformative effects of treatment (which routinely bring a skeletal, miserable child from the brink of death to normalcy in a matter of weeks or months). But instead she remarked simply how unfair it was -- to see the miraculous effects in these American kids, knowing what awaited her patients back at home, which was nothing. Now 10 years later, although theoretically all her patients who need treatment can get it, the complex issues of diagnosing children and getting them to start and continue proper treatment, and the prevention of mother-to-child transmission, lag maddeningly behind the capabilities of the currently available medications. Thus the cycle of death continues here seemingly unabated, even while the scourge has been all but eliminated from children in most parts of America.

As far as the famous area of Soweto, I had heard it has gone tremendous transformation over the years into a popular area of the city, with desirable residences and nightlife. We have found it to be indeed bustling and full of evidence of an active economy, but the dirt roads and tin shacks can still be seen everywhere. Certainly it has more commercial action than today's townships, with stands and stores on every corner, but it does not look like the trendy if gritty suburb I expected.

Una Mas Sweeties

The children of Sparrow eat like fiends. There is a general attempt among the staff to keep the children plump, with the intent of fostering nutritional reserves for times of illness or wasting, to stave off weight loss and failure to thrive. There is probably also an element of easy pleasing, treats being for the most part readily accessible means of enjoyment or reward for the kids. All the food is donated regularly by surrounding restaurants and grocery stores as it nears expiration. And finally, there is the perspective that in the bigger picture of these children's lives, some overfeeding and unhealthy attitudes towards food are not worth the effort to avoid, discourage, or correct.

Being orphans they just have a begging reflex, or habit. This morning I was walking with a banana and a nectarine to our car, and a group of them was playing behind a nearby fence. Even the oldest started shouting our names pleadingly, ignoring our friendly hellos and attempts to chat, saying, “Please! I want a banana. Give me fruits. I want fruits. I want sweeties. Can I have money?” Practically everyone they see hands out sweets. They are definitely not hungry because, as I have said, they are fed constantly here. And they do get fruit. It just seems that they want whatever someone else has, I guess because it is usually better than what they have.

Many children’s teeth are rotten, for lots of reasons. As we discovered, they don't always have their own toothbrushes and don't always brush their teeth. They are given candy all the time - at church, at the doctor, for being good or for being bad. They drink a Kool-Aid-like substance at every meal. Past bottle age they drink no milk. Of course it’s expensive and hard to store here. The water is not fluorinated. For any trace of calcium and other minerals, they are given Sejo as a snack, an expensive soy meal cereal, similar to Cream of Wheat but more calorie-dense. Some of their many medications also contribute to the tooth decay. They are always chewing on something, plastic objects or bits of balloon if not candy or gum. It is all in all a dental nightmare. Hence our toothbrushing campaign.

Here is a video of a trick a visitor taught the creche children one day:

Failure To Thrive

The funniest thing we have seen happened during Monday night clinic at the babies' hospice, and tragically we could not capture it on camera. The babies' hospice is where the sickest, dying infants and toddlers live out their lives, provided for by two caretakers who spend all their time making bottles and changing diapers (in only a few regimented time slots per day, regardless of need, because they're unionized). The hospice is just a small room with about 6 lead-painted cribs, 10 children, and a baby gate at the doorway. The kids range in age from newborn to 3 years old, but none of them have any real verbal skills and only one or two can walk or even stand. The others who are old enough just have not had the strength or time spent with adults needed to acquire these developmental milestones.

They are ravenous for attention and human contact, though, down to the smallest and most feeble among them. Every time someone walks by the doorway, the ones well enough to be playing on the floor (though I've only seen one toy) will rush over to the gate, crowding it and begging with their hands and eyes to be picked up and held. Some can say "ma" and repeat it over and over plaintively. If you give so much as brief eye contact to one baby, who lights up immediately, the others will hit or scratch the lucky one and attempt to push him out of the way. The acoustics in a dome are amplifying, so that if they are all crying simultaneously, the chorus of lonely unanswered misery is deafening. It is a mad, mad world.

Yet when you play or hold one of them, you discover that they can play peekaboo, or imitate words, or feed themselves with a spoon. They are loving and adorable and easily entertained. Of course, regardless of age, they will put on a heartrending stare of disbelief and bewilderment when you finally have to put them down and wave goodbye. If they are sated, they will blow you kisses in return, but more often than not you leave the overwhelmed caretakers with one more wailing baby.

ANYway, the babies' hospice is in an adjoining dome to the adults' hospice, some of whom have children (who may or may not be sick). One of the women living in the hospice has a friendly, fat little toddler named Dorris. On this particular evening, Dorris was leaning over the baby gate of the hospice, watching all the action, when she suddenly figured out how to open the gate. She gleefully swung it wide open, and instantly the gaggle of mobile babies started spilling out the door. They looked for all the world like they were sprinting for freedom, in any way they knew how - one toddling, one sitting and scooting impressively fast on her diaper, and one crawling strangely on her knees and elbows like an inchworm. Within a minute at least four of them had escaped and were headed towards the living room dome. They were easy to catch up with and collect, and seemed to enjoy their brief respite from their monotonous lives.

Here is a slideshow of that night's clinic:

Is That Johannesburg?!

Everyone says that Joburg is easy to navigate. Indeed, the roads are flawless, smoothly paved out to the far reaches. And we have an atlas. I don’t think I’ve used a real atlas since 10th grade geography class, but we refreshed our skills and have put it to frequent use. The problem is, the street names on the map do not correlate with the signs on the street, or with names people know. The names of everything have been gradually changed to mark a fresh start after apartheid. But not everyone knows the new post-apartheid names (which are frequently pre-apartheid, non-English, non-Afrikaans names), and not everyone remembers the old names. Furthermore, street signs are placed haphazardly, backwards on a post or in tiny font on a curb halfway down the block.

One day recently we were lost again, driving in circles and perfecting the art of the left-handed stick-shift u-turn. All of the sudden we looked up and saw the city skyline outlined just ahead of us. This was only remarkable in that we had been under the impression that we were very far outside the city, and aiming for a suburb in the polar opposite direction. Let’s just say we’ve put a lot of kilometerage on the car thus far, and have gotten to see some (in)famous areas of the city where tourists, and residents, don’t go without a very good reason. But between my (clearly inept) navigational skills and Kemi’s experience with manual transmissions, we have begun to streamline our travels and remind ourselves to turn where the street should be, and pay no attention to signs that are invariably misleading.

So far in Johannesburg, sadly, I’d say we have spent the most time in malls – fancy malls, strip malls, pedestrian malls, practically out of business malls. They are the only location we can find for internet cafes, light lunches, and "aircon." Regardless of level or location of the mall, there is a standard issue of stores at each one. Otherwise you would not know you were in South Africa, except the up and down escalators being switched. The music is almost exclusively American, both the latest hiphop and R&B and ballads of the 80s. Whitney Houston and Michael Jackson still have a huge presence, and I've enjoyed reliving my first awkward dances while jamming to "End of the Road" on more than one occasion.

A theater-sized screen in the food court at one of the malls, showing the provincial soccer league.

Everywhere we've been is oddly both very diverse and very segregated. We have yet to see any interracial couples or groups (except us). People are very interested in us and our accents, and especially Kemi, yet are hesitant to ask where we are from for fear of offending. One lady told us that wealthy blacks in South Africa tend to put on American accents, which may explain the negative reaction some people have had when Kemi does not respond to them in Zulu. On the other hand, we have seen no instances of real racial tension, and certainly we have felt comfortable and welcome everywhere we've been in public.