Each week I go to Kara Clinic, I see at least one patient who stays in my memory. Sometimes it’s a patient’s story, others it’s a demeanor, a mood, a facial expression, sometimes it’s a medical condition, and sometimes it’s all of those.
Last week I saw a little girl, let’s call her Violet, brought in by a young, professionally dressed woman who turned out to be her aunt. Violet was 8 years old, though she looked younger. She was scrawny and slight, but it was hard to tell exactly how much so because she was wrapped in many layers of sweaters, jackets and a warm winter cap. She said not a word the entire time, but was clearly very aware of it all, for she responded to questions with a nod or shake of her head.
In bits a pieces, through cryptic words from the aunt, and what was written on Violet’s chart, we determined that this little girl was newly diagnosed with HIV and was there for her initial enrollment H & P. Both of her parents were recently “late.” The aunt made it quite clear that Violet did not yet know her own status, and so it was not okay for us to say “HIV” out loud.
But at age 8, sick as she was, with two dead parents, how could she not know?
During the physical exam, there is a checklist of systems to go through, body parts to examine. During most of my exams that I’ve done at the clinic, there will be one, perhaps two, abnormal findings. The rest get ticked in the column on the left “normal, normal, normal.” Violet’s “abnormals” far outnumbered her normals. She had tinea (ringworm) on her face, head, body and extremities. She had a chronic ear infection draining pus. She had a thick patch of candida growing on the tip of her tongue. The undersides of her eyelids were a pale white, a sign of severe anemia. I could feel her enlarged liver on my abdominal exam. She had crackles in her lungs.
As I sought to examine each system, she dutifully and quietly followed my directions. Open your mouth. Take a deep breath. Lay down on your back. Squeeze my fingers as tight as you can. With each, I made an unexpected and unwanted discovery. Each was a reminder of the awful virus ravaging her body.
All I could keep thinking was that she had not been told. In many ways, I understand how hard it must be to have that conversation with an 8-year-old girl. This was a new diagnosis, she had not yet been started on her ARVs, and so it was all rather new. But it’s a conversation that must be had soon. I kept looking at her young aunt, who looked scared, worried, sad and stressed. I would not wish that position on anybody and I know she’s going to need all the help she can get.
I’ve heard about children here who have been taking their ARVs for years, for as long as they can remember, and have never been told why. Surely the damage from not understanding their illness, being lied to about their illness, is worse than the struggle of learning to live with it?
CIDRZ has pediatric peer educators and pediatric support groups that attempt to address all these issues and lend support to both the children and their caregivers. These are issues children should never have to deal with. This is yet another consequence of this epidemic: an entire generation of children forced to accept HIV as part of them, to have never known life without it.
Last week my patient was memorable for her symptoms. Last week I found myself being that student (or intern or doctor) who gets excited about pathology for learning’s sake. Surely we don’t wish uncommon pathology on people, or any pathology for that matter. But there it was, playing out in front of me and it’s kind of thing I’ll always remember, “back when I was in Zambia, I saw that women with the…” Maybe I’ll see it again in the future and recognize it because of her.
When I entered the room, a middle aged woman sat in a wheel chair, blankets piled thick on her lap and around her legs, disheveled hair, a far off gaze, and distinct but faint urine nursing home smell. She was accompanied by a sister and nephew. This woman, I learned from the PA, had had HIV for many years and had struggled with adherence to her medication. She had documented in her chart long stretches of time when she had not returned for follow up visits and medication pick up. Clearly this doesn’t lend itself so well to successful treatment. She had come in on this visit because over the period of several weeks, she had a steady and progressive paralysis of her body. It started in her feet and had now reached all the way to her abdomen. She had lost all sensation in those same areas. She had also become incontinent of urine, but had not had a bowel movement for three weeks.
It was her sister who did most of the talking. While the patient could talk, she didn’t seem much in the mood. I’m not sure I would be in the mood to talk about adherence either if I had very quickly lost use of and control over half of my body.
I reached down to that file cabinet of physical exam knowledge in my brain that hasn’t been used much in several months and opened the drawer for the neuro exam. But there it all was, ready to go, sensation, motor, reflexes, dermatome by dermatome, nerve by nerve. And I have to admit, although perhaps a bit gruesome sounding, it was very interesting to palpate the abdomen of somebody who had not had a bowel movement for 21 days.
There are many things that can cause those types of neurological symptoms in an AIDS patient. We sent her over to UTH, the teaching hospital, for admission. But it’s certainly the most advanced AIDS-related neurological syndrome that I’ve gotten to see myself.
By the end of the visit, we had her talking a bit more and I think she might have even smiled a little when I wished her well and said goodbye.
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