It takes a village...

June 27, 2005

One thing that has really struck me about Malawian culture is the strong and inclusive concept of family. This is especially evident in the Baylor clinic, where many of our patients have lost one or both parents to HIV. With so many orphans here, the cliché “it takes a village to raise a child” rings truer than you could ever imagine. Grandmothers, schoolteachers, mothers’ brothers’ wives’ friends, all play major roles in these childrens’ lives and from what I’ve seen, they are often happy to do so. I can still imagine the yelp for joy when I told a woman that her baby sister (who she acted as guardian for after both their parents had died of AIDS) had tested negative for HIV, and the tight hug of the baby girl which followed… though I’m sure she would have cared for the baby either way.

You hear all kinds of new descriptives for family positions here- for example, an eight year old patient was brought today by his “young father,” which meant his own father’s twenty-one year old brother, an affable and educated guy who has had full custody of the kid for the last three years since both parents passed away. While I myself can’t even imagine starting a family until at least my late twenties, here was somebody who stepped up and took responsibility for his HIV positive nephew at the dawn of his own adulthood. There was no agenda here- it was sheer family loyalty and duty that compelled him to give up many of the luxuries of being a carefree teen or twenty-something. And he seemed quite contented in his position to boot, taking pride in his nephew’s school achievements, helping the boy learn English at home, and showing deep concern for the boy’s well-being. We noted that the young father” had been so compliant in administering his nephew’s ARV regimen that we were able to lengthen the intervals between the child’s maintenance visits from two weeks to two months.

Though we see many positive stories of people like the “young father” or the many grandmothers, either taking on parenthood early or going through round two of it for the sake of their HIV+ kin, there are also too many kids that have nobody- or are not cared for by the few they have. At the hospital last week, I encountered an orphan male patient who was many hours from his home village undergoing what we thought to be Stevens-Johnson syndrome (SJS).

HIV fact of the day: Stevens-Johnson syndrome is an allergic reaction that starts with flu-like symptoms and progresses to circular lesions all over the skin and mucous membranes. When severe, it must be treated almost as a major burn- the fluids lost due to all of the damaged skin must be replaced intravenously, and particular lesion sites such as the eyes and throat must be monitored closely. Though SJS is rare overall (1 in 1 million incidence), HIV patients experience significantly more than that baseline rate especially because SJS can be provoked by the first-line ARV drug neviripine, as well as the sulfa drug antibiotics which all HIV+ children (ideally) take as prophylaxis. Mortality is about 40% for the untreated, as opposed to <5% for those given adequate hospital care.

To continue the story, as the boy was worsening, we heard from his uncle (and legal guardian) that they both needed to return to their home village or else the uncle would lose a lot of business at the grocery shop he runs. As much as the Baylor doctor-on-call Kebba tried to buy a few days for the boy in our hospital by explaining to his uncle that their local hospital would not have the ability to handle SJS complications and that transport there would be unsafe, he was not hearing it. Since the family had other relatives that live near to our city of Lilongwe, Kebba tried arguing that one of them should be called for and stay at the hospital with the boy so that the uncle could go back. That he still could not understand the logic of our argument baffled us. That’s when a nurse pulled us aside- she’d overheard the uncle speaking with a relative about what the REAL problem was: the uncle was afraid from the looks of the boy that he’d die here, and feared the cost of transporting the body back to their home village. This infuriated us, considering that the boy in question was STILL ALIVE and had a great chance of staying that way if cared for! However, Kebba was able to keep his cool and tactfully shame the uncle into letting the boy stay… after which he recovered and all was well. So I guess it took a village after all, with this one including a doctor that cares.

BTW- the picture is of me on a day trip into the actual village nearest Lilongwe… but I thought it’d be appropriate ;)