Patient Stories

So, for some time now I have been wanting to write some stories of some of my patients. Some are stories of frustrating struggles that paid off in the end, and some are stories of the lengths mothers will go to for their babies.

HIV here in Zambia, as around the world, still has stigma attached to it, but that is slowly changing. When the ART clinic first opened, patients were allowed to register with false names, and doctors saw patients after hours or at their homes. Over the years, however, led by a few with the courage to share their status openly, the stigma is breaking down. People greet each other in the halls of the ART clinic, share their status with visitors and openly come to VCT for testing. Occasionally you still find the nurse in charge seeing people in an office so the patients don't have to be see waiting in the halls with the other patients or you might hear of hospital staff dying of AIDS because they refused treatment, but not so frequently. There is denial, fear of family or friends finding out, the belief that herbal remedies or faith healing will work better than imported ARVs. A whole host of reasons why people refuse treatment. Luckily in Zambia, there has been lots of training of lay counselors who talk with people about hiv, give them information and encourage them to make wise decisions about their diagnosis, treatment and lifestyle. Many of our counselors are hiv+ themselves, they make the best counselors as they can speak from experience. Recently I was reviewing with some of our counselors a couple cases in which our persistence paid off.

L was a 19 year old with her first pregnancy. She came for prenatal care when she was 5 or 6 months pregnant. We drew her CD4 and it was only 57, (below 200 is considered AIDS and below 350 you are put on lifelong HAART.) Despite this, she seemed healthy and strong, and maybe that contributed to her refusing treatment. Several of us met with her and talked to her and pleaded, but she was fearful the people she was staying with would find out (she was not married). When the CD4 is so low, the viral load is very high and the disease is very contagious. Finally one of our nurses convinced her to take AZT which we usually give to pregnant women with CD4 counts over 350. It was better than nothing, but we didn't think it was enough. It was not until after the baby was born, that one of our counselors who is hiv+ herself with 2 children was able to convince L to start on full HAART. L knew this counselor and her children, and the counselor revealed her own status and that her children were hiv – after she took HAART during pregnancy. Finally L was caring for herself and hopefully there was still a chance the baby would not get infected, but I was doubtful. The baby's first DBS done at 6 weeks came back negative, very good news. Then came the 6 month test, still negative, it was beginning to feel like a small miracle. Just the other day L came in with 10 month old S who is weighing in at 9.8 kg! Quite large by Zambian standards, he looks like he is nearly 2. L and I can't speak to each other, but the way she looks at me, I know she realizes what a good thing it was that she came around for her and her baby, and I am sure she is grateful for all our concern and persistent nagging of her to get on board.

Another story is of a woman who did not come for prenatal care till she was nearly 9 months pregnant. Turns out her husband (a friend of one of our counselors) had been hiv+ for three years but had never told his wife. As we ask women to come with their husbands or partners to their first visit, so they can both be tested, it was probably his reluctance that kept them away so long. They both tested positive and we put mom on AZT while we waited for her CD4 results. They never came back for those, and by the time one of our counselors went to their home to find them, she had already delivered. If a woman delivers at home, but gets to the hospital within 72 hours, she and the baby can still get meds that will decrease the likelihood of transmission to the baby. 5 days had already passed, it was too late. The mom's CD4 was low enough to warrant her to be on full HAART, as was the husband's but he was refusing treatment and she didn't want to start without him. We tried to work with her and encourage her to go on treatment despite her husband to protect her and the baby. At first she refused, but eventually after a few weeks she came in on her own to begin treatment. The baby didn't look so healthy to me, and I was concerned perhaps the virus had already transmitted, so we had mom and baby open files at ART. I am happy to report that this baby also has had two tests come back negative, and mom continues on treatment despite lack of support from her husband.

Two babies that I have been following were diagnosed about the same time. A's mom tested negative during pregnancy, but later when the baby was a few months old, he fell sick and entered the hospital. There mom was tested and came back positive. For over a year we have been testing all patients in maternity and peds (the mother/caregiver if infants are younger than a year). So a dbs was performed on baby and it came back positive. Unfortunately, before we got A on meds, he got quite sick again and was admitted for TB and malnutrition. People must be on TB meds for 2 weeks before they can start HAART. I visited A and his mom a few times a week and prayed for little A. This was mom's only child and one of the doctor's told me he had a 50/50 chance of pulling through. He was running a fever and very lethargic. We don't do IVs on kids here, because we don't have machines to control the amount of fluids going in and fluid overload can cause too many problems in small children, so mom's have to work hard at keeping the kids hydrated. A was put on antibiotics, antiparisitics, analgesics and later the TB meds and then HAART. So many meds for this little body. He spent days just laying still, I remember going in one day and seeing him holding a balloon animal someone had given him. He wasn't playing with it, just holding it as he lay in bed and looked at mom. I was unable to speak to mom, but I would bring food and stay for a few minutes, somedays he seemed better than others. Eventually he got better and went home. Mom lives quite some distance away, but thankfully she lives with her parents, so she has some financial and emotional support. She didn't lose all her crops while spending weeks in the hospital with her son. She has had frequent clinic visits over the last few months as A needs to come to both the chest clinic and the ART clinic for meds. He started his TB treatment on 4 meds, now he is down to 2. For HAART he is on 3 plus a prophylactic antibiotic. I can't imagine mom keeping track of all these meds and working on feeding this wee one with all the other tasks in life. One of the meds he is on for hiv is very bitter tasting and lots of babies spit it back out. Mom has been expressing her gratitude to several of us in the clinic by bringing gifts of food. I have received two live chickens, a bunch of groundnuts, some sweet potatoes and a large papaya. Recently she made an extra trip to the clinic for a med refill as there would not have been enough to get A through the long holiday weekend. He had just had his one year birthday, and I bought him some clothes and a little toy car. He is still a bit timid around me (understandable with all the poking and prodding he has been through) but he was quite eager to hold the car and push its wheels round and round. He is still quite skinny, but seems quite long, so I think his growth is picking up.

A's mom tested negative during her pregnancy, but was never retested. We have started retesting pregnant and breastfeeding women every 6-8 weeks, because hiv is most contagious when you are first infected and then years later when your CD4 count starts dropping. We hope to catch women as soon as possible after they are infected to better prevent transmission to their babies.

There is another mother in a similar situation, though her baby M is a few months older, and never got quite as sick as A. However, he was in the hospital and is also on TB meds as well as HAART. Mom and M came into the clinic one Friday for meds. She was two days late for her appointment because she rides 60 kilometers on her bike (with M tied onto her back) to get to the clinic and she had had a breakdown on the way. This would mean finding a place to stay in the nearest village until parts could be found and the repair made. Fridays we don't see patients in the clinic because we do mobile clinics on those days. So if patients show up, it takes us a bit to find a file and then a clinician to see them. As they were waiting, I could here mom talking to M and his playful, happy laughter like that of a healthy toddler. It was quite heart warming.

M's mother tested positive but had a high CD4 count. She received what we call short course, AZT during pregnancy and then 2 other meds during labor followed by the baby receiving Neveripine while breastfeeding. While this course of meds, if administered correctly reduces the transmission rate from 35-40% down to 12-15%, some babies, like M are still infected. As of this year, we have started putting all hiv+ pregnant women on life-long HAART. This reduces the transmission from mother to child to less than 1%.

A and M are doing well, having gotten on treatment early in life, but our goal is to prevent more such cases. With these new methods, we hope to do just that.