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.
