Stories about Sipho, Part 1

Today, (RED) is proud to announce that thanks to our (RED) community, the sales of (PRODUCT) RED products have generated more than $45 million in contributions to the Global Fund.

Also today, we received this great letter from Dr. Ryan Phelps, who works at the Baylor Clinic in Swaziland – a medical center that specializes in treating children with HIV, and also treats their mothers and the rest of their family. Regular blog readers may remember Adele and Karen’s visit there in March this year.

Dr. Ryan writes below about Sipho, a young Swazi boy who is starting to benefit from the antiretroviral treatment that (RED) money is helping to pay for, through the Global Fund.

Dr. Ryan has promised to us posted on little Sipho’s progress, with photos to come, so stay tuned…

Every reader of this blog knows what an anonymous dying child looks like. Pictures of unnamed, deathly ill children (especially African children) are in our newspapers and on our TVs.

Like you, when I see such pictures, I feel chilly and restless.

Every reader of this blog knows that, when it comes to the global HIV epidemic, the numbers have a lot of zeroes in them, and that the anonymous sick and dying can fill most of the sports stadiums of the world. As for the dead…well, we would have to build more sports stadiums.

Sipho does not play sports. When I met him last month, he could barely stand.

When I first shook his hand, it felt more like a garden fork than a hand, and, as I held it, I thought Sipho was going to die. Today I can begin telling this child's story, because now I believe that he is not going to die. I am not sure about this, for he is still very sick.

On the other hand, Sipho started taking antiretrovirals (ARVs) on July 26, 2007, and I know of no medicines more transformational and redemptive than those that make up highly active antiretroviral therapy, the lifesaving medication that (RED) funds are helping to buy, through the Global Fund grant to Swaziland.

Sipho is an 8-year-old boy. He lives in a rural area called Nlangano here in Swaziland. He is HIV positive.

I met Sipho mid-afternoon in mid-August, 2007 after shouting the number "eighty two" into a crowded waiting room. He was the eighty-second in line to be consulted at the Swaziland Baylor Center of Excellence (COE), where I work.

“Eighty two.” Hearing his number, Sipho rose with his mother's help and, with his mother's hand under his right arm, walked towards me. As he approached, I shook his rake-like hand and felt that sad, empty feeling that comes when I see the ruin of what should be a healthy child. I unwittingly sighed. It was one of those why-and-how-does-this-still-happen sighs, the type of slow, labored exhale one gives when reality casts its shadow on hope.

Sipho did not cast much of a shadow, at least not literally. The redundant waistline drawstring of Sipho's khaki sports pants dangled around his knees. No, this child definitely did not play sports.

After a couple minutes of small, slow steps, I closed the exam room door behind Sipho. The reverberating din of the remaining patients in the waiting area became barely perceptible, white noise. With a careful pivot and bow, Sipho's mother lowered the child into a one of the room's nondescript plastic black chairs, where he supported himself with both arms.

There he sat, looking at me. The white of his eyes were picket-fence white, contrasting sharply with his espresso-colored irises. His eyes were shiny and alert like those of a child, but his eyelids were heavy, like a very old man's.

His face was thin but creaseless, except for where his heavy lower eyelids rested against his cheekbones. He did not wear a smile and there was little evidence that he ever had, so creaseless was his face.

His expression was that of one who was accustomed to expecting the worst.

On July 5, 2007, when Sipho first arrived at the Baylor Center of Excellence just before his eighth birthday, his CD4 count was 0.1%. (Unlike adults, the CD4 count of pre-teen children is monitored as a percentage rather than an absolute number. Normal is around 30% or more.) When Sipho was first weighed, the COE scale read 13.4kg. (Placed in a room of a thousand other boys his same age and height, he would easily be the skinniest.) The medical terms for his condition are "severely immunocompromised" and "severely wasted."

When Sipho first come to us, he had been having watery diarrhea six times a day for three months and a cough for the same amount of time. HIV was suppressing his bone marrow's creation of red blood cells, and his hemoglobin was 3.4 (the lowest value I have seen in a living child). He had been transfused an estimated 10 times over the previous three years.

In addition to whatever was causing his current diarrhea and pneumonia, Sipho had been host to several other bugs that were taking advantage of his weak defenses, so-called “opportunistic infections.” These microbiological opportunists included pulmonary tuberculosis, oral thrush, oral herpes, human papilloma virus, ringworm, and impetigo (plus any pathogens that had evaded diagnosis).

After reviewing Sipho's records, it was no surprise that this child was expecting the worst, for that is what he knew. The surprise was that the Sipho was still alive.

Sipho’s heavy-eyed gaze persisted. Looking up from my chart review, I suddenly realized that, as the pediatrician in the room, it was my turn to do something.

TO BE CONTINUED…

About the Baylor Center of Excellence
In southern Africa, 40 to 60 percent of all deaths of children under age five years are caused by HIV/AIDS. Despite this fact, in almost every resource-limited setting worldwide where HIV/AIDS treatment has been initiated, children are grossly underrepresented among its recipients. The Swaziland Center of Excellence is helping to address this discrepancy. The COE is part of a global network of clinical centers created by the Baylor International Pediatric AIDS Initiative (BIPAI) at Baylor College of Medicine. These clinics are modeled after two landmark HIV/AIDS care and treatment centers that BIPAI constructed and opened in Constanta, Romania and Gaborone, Botswana. The purpose of this network is to build critical infrastructure and human capacity to catalyze access of children worldwide to HIV/AIDS care and treatment.

These clinics are staffed by local health care workers and members of the Pediatric AIDS Corps, a group of over fifty health professionals that are linked to one of the Baylor Children's Clinical Centers of Excellence for purposes of professional development and training, continuing education and clinical consultation. In collaboration with local health professionals, we spend our time here building local capacity through one-on-one clinical mentorship and didactic trainings. We also provide high-quality pediatric HIV care for children like Sipho.

For more on Dr Ryan Phelps’ experiences in Swaziland, go to pediatrician-in-swaziland.blogspot.com.