Out-performing your peers with one hand. Sign of Strength.
When I was young, a teacher assigned me to describe my worst fear. My worst fear at that time happened to be loss of my hands. I made a movie about it, drawing clips from popular movies featuring Hollywood-style amputations. I even went so far as to give it a Stanley Kubrick-esqe title: Chopsticks. In college, as an operating room orderly, I hadn’t shaken the fear. I found that no amount of blood or sizable open incisions could turn my stomach. But, amputations transformed my old fear into a hard knot inside me. To this day, I vividly remember an 80-year-old woman, whose life was being saved, losing both of her legs simultaneously. I had to carry her legs to the pathology lab. I would have rather carried a corpse, young, beautiful and intact.
With that memory in mind, I saw a handicapped child several weeks ago. He was missing his left hand. Recently I remembered—with a bit of panic—that I forgot to record that he had had an amputation. That fact, surely, must go in any publication that results from my study. Or, he will have to be excluded from the results. Perhaps one of the research assistants recorded it, or remembers. They can be lifesavers, sometimes. How could I commit such an obvious oversight?
In trying to figure out which child he was, I conjured up my memories of the assessment, trying desperately to find an identifying feature. I remember looking at the end of his arm. There appeared to be a scar there, as if the hand had been removed (probably traumatically) and then surgically debrided. What calamity befell an infant that he lost a hand? I thought, with chagrin, that life in South Africa was going to be difficult for him. Life is difficult even for able-bodied men who grow up in the townships. I had briefly considered inquiring about his hand, but I didn’t bring it up. His mother didn’t either. I began the assessment, placing a small block on the table in front of him. The test requires the infant to take a block in each hand. He must then attend to or attempt to grasp a third block. What does an infant with only two hands do, when confronted with three blocks? What does a one-handed infant do, when confronted with three blocks?
I remember, then, that he picked up the first block and stuck it under his arm. Immediately, he picked up the second block and stuck that one under his arm, leaving his hand free to reach for the third. No other child had ever done that. Most of them, even the older ones, take the first two blocks, so both hands are occupied and then stare at the third, pondering how three blocks can fit in two hands. The test is about cognitive abilities, I remember thinking, Not motor. And he had found a solution that did not occur to other children. I soon forgot about his missing hand. It was, in fact, one of the most enjoyable assessments I have performed, out of ninety, so far.
When we got to the motor sections, I learned that the assessment does not require ambidexterity, only coordination. And he performed above average. Above average. His fine motor abilities are better than half of infants, anywhere in the world. He only has one hand.
In my reflections, I remembered one of Jesus’ strange, likely hyperbolic statements, “If your right hand causes you to stumble, cut it off and throw it away.” I think about taking that passage literally, and I shudder. Yet, to every infant but this one, possessing a second hand was a handicap. This one-handed infant showed creativity that would shame those who appeared normal; who appeared stronger. To him, he has no handicap. In fact, he displayed a strength that is unique to him. Objectively, he has no handicap.
I spend most of my days seeking some form of strength, some sort of ability that will allow myself to accurately describe myself as a man. Yet, this child shames even me. His strength requires attribution to weakness. I have so rarely seen strength in this world.
I have seen able men scrape themselves across pavement in a desperate plea for pity. I have seen beautiful, intelligent women sell themselves for a few dollars. And now, I have seen a one-year-old man, superlative and without handicap, humble and inspire the proudest man I know.
After these brief reflections, I gave up searching for his identity. I did not ask the research assistants to find out which infant had had an amputation. What reason is there to exclude this infant? What note would I make in my publication? The one-handed infant outperformed his peers, and therefore, was excluded from this study. The sentence does not properly belong in a blog post, let alone a peer-reviewed, scientific publication.
The day starts with a cup of instant coffee in the hopes of shaking the feeling of “I shouldn’t have stayed up reading last night but I probably will again tonight.” Honestly, the coffee should be a decent pot of French pressed African brew, but I have taken to waking up at the last possible moment. (I used to be better: it was yoga, a Psalm and a proper breakfast; but alas, no more.) Still, I do not actually wake up until I am driving through the heart of Pretoria threading my Renault between a taxi and a Putco bus. If Highveld radio is cooperating, they have finished their Jo’burg traffic reports and are pumping LMFAO. Wiggle, wiggle, wiggle.
My mornings consist of waiting for clients and performing neurological assessments. The clients are a strange mix, some appearing as if they just came from the farm and others stylishly dressed complete with heels and dangly earrings dangerously within the grasp of a one-year-old. The babies are equally diverse, if more in demeanour than appearance. Kids come loaded with a personality at a very young age. Some babies are scared of everything that isn’t there mother’s boob—It’s a block, kid; I promise it won’t hurt you—and others leap at me and start tearing into the toys. Block in face, sqeaky-toy down, crayon in mouth, time to jump off the table. They even respond to the needle-prick differently. One kid started bawling, waving her hand around and flinging blood everywhere. I ended up wiping the blood out of her hair with an alcohol swab. I have baby blood on my hands. Another little girl cried for the entire assessment until I stuck her finger; then she was calm and cool.
On a good day, I finish with my assessments by one. Then it is lunch in Kalafong’s Klinikala courtyard, the patient-free safe-haven of Pretorian medical students. Lunch is, occasionally, surprisingly tasty. Though, perhaps three months of my own subpar cooking have lowered my standards. South African medical students are on summer break now, so lunch is usually accompanied some reading of a decidedly non-medical sort. Why read yet another article about HIV-associated whatever, when you could read about futuristic California, ancient Chinese military history, or, well, anything else.
I pass the afternoons with data entry and reading those neglected articles on HIV-associated whatever. The Fugees and Thelonius Monk make this ritual bearable. I am home between four and five, after round two of death-defying feats of automobile aggression. Only driving in Boston is more fun than this.
Then, there is usually a run, the above-mentioned subpar cooking, a Black Label or Windhoek and, finally, recording a few of the day’s events in Afrikaans. Ek wil baie ‘n Boston bier kry, maar ek kan nie. Jammer. Some nights I get to rock climb, and, like I said, I used to do yoga. Other nights I hang around the district hospital emergency department, sifting through charts for lacerations and deftly avoiding cases of full-body pain and epilepsy. Those nights are fun, if exhausting. The casualty ward is one of the places in South Africa where race is moot, at least among the staff. Besides, every now and then a Mozambican finds his way in and I get to butcher yet another language, whilst sewing a bloody hand. My suturing, thankfully, is far superior to my foreign language abilities.
Later, if the mosquitoes stay away from my ears, I sleep like a baby, and dream about babies, and wake up to more babies.
Jesus said, “Let the little children come to me, and do not hinder them for the Kingdom of heaven belongs to such as these.” -Matthew 19:14
A few weeks ago, I visited some old friends I had met a few years ago in Mozambique. They have since moved to White River, Mpumalanga, South Africa. (As a reference, they live very close to Kruger National Park.) They have a beautiful children’s ministry there, Michaels Childrens Village. MCV is set up as a home-based care model. As opposed to the traditional orphanage setting, they have three houses in which house parents foster and adopt children through the South African government. Two sets of house parents are from Mpumalanga province; and the other is a young couple from Australia.
The reason for my visit was Christmas. Teisa lived in New Orleans for six years and my church there, All Nations Fellowship, knows Jean and Teisa well. They asked me if I would be willing to shoot a short video of the kids and the home as a promotion for their Christmas events, which mostly involve giving a ton of presents to kids in the community—about 200! Jean and Teisa call them their “extended family.”
The music is George Winston playing “Cast Your Fate to the Wind” from Linus and Lucy. (Other options included Jars of Clay, Kirk Franklin and the Fugees, none of which possessed the requisite Christmas flavor.) I also have a few other clips of adorable kids being adorable. Unfortunately, my current WordPress account configuration will not allow me to upload videos to my blog. But, in order to share the general jolliness of these kids, I am planning to upload a few clips to Facebook.
I recently had an opportunity to present at the Center for Disease Control journal club at its branch here in Pretoria. I had been introduced to some CDC people at a birthday party for Team America. Through them, I met Joel Chehab, the epidemiologist who runs the journal club. He is awesome. By awesome, of course, I mean he attended the Tulane University School of Public Health.
I picked a topic dear to most men’s hearts: their mothers. (Honestly, did you think I was going to write “boobs”? Why would you think that?) And a topic dear to mine: HIV-exposed, uninfected infants. And a topic close to Arianna Huffington’s: why I will never go into plastic surgery.
In the early 2000s, the World Health Organization had been recommending to HIV positive women that they wean early and abruptly. The idea was to maximize the benefit of breast feeding and to limit the risk of mother-to-child (“vertical”) HIV transmission. Sounds great in theory, right?
Unfortunately, as scientists, our collective common sense is either deficient or altogether lacking. It is therefore not to be trusted and even the most basic assertions must be tested, retested, peer-reviewed, misrepresented in the media, meta-analyzed, twisted for political means, discussed at conferences, ignored by many practicing physicians and, finally, rejected in favor of the null hypothesis.
Accordingly, the paper I presented places that specific, common sense WHO recommendation squarely in the latter category: rejected. Louise Kuhn is an expert on HIV-exposed, uninfected infants. (She works at the second best university in New York City.) In 2001 she and her colleagues began a study to test the WHO’s assertion. They gathered about 1000 Zambian, new mothers and separated them into two groups. One group was instructed to stop breast feeding abruptly at four months. The second group was instructed to cease breast feeding whenever they wanted. They found that, not only was there no benefit in terms of the number of infant HIV infections, but that early weaning doubled infant mortality.
In fact, their findings are more compelling than the above paragraph suggests. Almost all of the infants in Dr. Kuhn’s study were enrolled before anti-retroviral drugs were publicly available in Zambia. So, a huge number of those infants became infected with HIV. Today—about seven years after the study ended—the infant infection rate is much lower, because of the drugs that are currently available. So, Dr. Kuhn’s study under-represents the benefit and over-represents the risk of breast feeding.
Their conclusions: boobs are good. Aside from the innate male understanding that this statement is true, it also resonates with quasi-hippie bias that nature’s way is generally the better way.
More importantly, even HIV-infected boobs are good for babies. This news has a huge implications for South Africa, as one-third of all infants born in this country are born to HIV-infected mothers. The South African government has responded to this research by phasing-out its formula subsidies for nursing, HIV positive women.
As an aside, from my discussions with CDC staff and from my own observations, the barriers to breast-feeding appear to be more social than biological. South Africa functions like the US or Europe in that many mothers work. Moreover, unlike surrounding countries, there is safe tap water with which to mix formula. It is therefore quite difficult to convince a working, HIV-positive woman that breast feeding is worth the substantial effort required, notwithstanding the perceived risk to her child.
The experience of presenting to the 10 or so medical officers was a real pleasure. Though my critique of the paper was quite boring—it was a well conducted, compelling study, with few weaknesses to criticize—the ensuing discussion was fascinating. It ranged from PEPFAR programs to personal anecdotes about the dysfunctional South African medical system. (Quite honestly, from my experiences working in the district emergency department, South Africa puts the “fun” in dysfunctional. Har, har.) Perhaps those types of discussions are tiring for CDC officers up to their ears in programmatic politics, but I rarely get to be involved in high level considerations of health systems and programming.
I have been attending the journal club for almost two months and I have found the discussions a refreshing break from my day-to-day research. Other recently presented articles include the effect of point-of-care CD4 testing and an analysis of the effectiveness of PEPFAR. I plan to continue for the rest of my time here and I hope to get involved with a CDC study on cryptococcal meningitis early next year. And, if Joel will let me, I will definitely present again.
“Count something.” -Atul Gawande
In a previous post, I criticized the emphasis of HIV research, citing the enormous amount of money spent testing novel interventions that are unlikely to change the course of the epidemic. In this post, I think it is requisite that I take the other position. To be clear, I am not writing this repentant post in order to be “fair”. (My Irish mother took care to inform me that life is not fair.) This post is also not for the sake of making my own argument stronger. Rather, I feel a burden because my own research project is not directly saving lives. More importantly, on principle, every effort to make observations about our world is intrinsically valuable. All of science hinges on that idea.
Taking solace therein, I will confess that my sole job is to count things. Babies, to be exact. To be more exact, I count the neurological development of infants. When the study is over, I will have assessed 200 infants in an attempt to quantify the effect of in utero HIV exposure on their development.
Today I counted the mental abilities of four babies. With each of them, I spent about 45 minutes handing them toys and puzzles and recording their responses. I make them all ring a bell, then stack blocks, and then, for a grand finale of mental achievement, I have them put the square peg in the square hole and the round peg in the round hole. Altogether, I spent a grand total of three hours playing with babies.
That is correct, I spent most of my workday playing with babies. I will do the same tomorrow, and again the next day, until the requisite 200 babies have been played with and assessed. Then, I get to publish a scientific paper all about playing with babies. I get to list “Baby Playing” on my curriculum vitae. (If all you had listed on your CV were Founder and CEO of Facebook, or some other inanity, I would understand your jealousy.) When some residency director asks me what I did on my research fellowship, I get to grin and say, “Sir, I played with babies for an entire year.” What did you do on your research fellowship?
What is more, I am actually getting paid for playing with the babies. Why is someone paying me to pad my resume with toddler time? Setting jest aside momentarily, our research group is testing a theory regarding HIV-exposed, but uninfected infants. I wrote a recent post in order to introduce briefly the idea of HEU populations. These kids are my babies. Our hypothesis is that being born to an HIV-positive woman will delay neurological development by a measurable amount, even though the affected baby is HIV negative. In order to put that theory to the test, we are using a scale that was developed about 50 years ago by psychologist Nancy Bayley. The scale consists of a series of games and toys and puzzles that the infants have to solve. The bell I mentioned above is a good example. Does a child ring the bell, explore it, or simply put it in her mouth? Is a child at a level mentally where she can put the circle piece in the circle hole? Do social cues and phrases make sense to a child? (Click here to watch an example of the test.)
So, now I ought to humble myself (surely a rare occurrence). The CAPRISA researchers I criticized are identifying new ways to curb the HIV epidemic. If their product does not work well, they will likely come up with something else. I, however, am playing with babies and calling it research. Notwithstanding our research question is new and unanswered, I am merely counting things, observing the effects of natural phenomena. I may as well take a nap under a tree and wait for an apple to fall on my head. Or rather, I should take a long, bird watching walk on a deserted, South American beach. Such is the difficult life of a researcher.
This is a problem. Every third infant in South Africa is born to an HIV positive woman. Even without the help of doctors, most of those infants are born HIV negative. With the advent of prevention of mother to child transmission programs (PMTCT), that HIV-negative number approaches ninety-nine percent. Nature is wonderful and medicine helps. Properly treated, pregnant women are very unlikely to pass HIV on to their children.
But to answer one question is often to confront a dozen more. This is one of those paradoxes. These infants get sicker more frequently with more severe disease than other newborns. They die at a much higher rate than their contemporaries. And no one knows why. There are theories, and there has been research, but no one has figured it out yet.
These newborns are called HIV-exposed, uninfected (HEU) infants. And there are a lot of them: about one in five infants born in Africa today are exposed to HIV in utero. One observer commented that any health issues displayed by this group represents an enormous public health issue for the entire continent.
These infants are the subjects of my research in South Africa. As background, I had to read fairly thoroughly on their health problems, the theories behind those problems, as well as prominent researchers in the field. I will share a few more posts as my research year continues.