I know I have been mainly posting about my life outside work. This is partly because I do not even know how to explain it at times. I decided, however, that in the spirit of World AIDS Day tomorrow, December 1st, I would share some of my experiences here in sub-saharan Africa where so many people are infected or affected by the HIV virus. Work overall is both intelluctually and emotionally fulfilling. Almost everyday is full of a wide variety of experiences. Sometimes the degree of illness, poverty and social issues is overwhelming. The kids though are so beautiful, warm and loving that it makes it all worth those frustrating times. While there is a lot of death there are also children who are becoming healthy and regaining their childhood. I think I will start with some of the tough experiences first then follow it up with the experiences that get me through the rough patches.
Last Tuesday I saw a four year old new diagnosis at one of our satellite clinics. Her mother had just found out that she was positive when she was giving birth to her now two week old son. The four year old was carried in by her mother. She was an absolutely gorgeous little girl, who I could see from the doorway was malnourished. She weighed 25 pounds. An average kid in the US reaches 20 lbs around one year of age. On history, I discovered that she had been having vomiting and diarrhea for a couple of weeks, a cough for a month, and severe headaches for close to a month. She also three weeks ago had started having stool coming from her vagina. This is likely do to a connection, or fistula, that has formed between her rectum and vagina. Her CD4, the immune cells I have mentioned before, were 1% or a total of 11. Obvious that is low, but to put it in prospective for someone her age we would recommend anti-HIV medications when the CD4 is less than 15% or 750 total. She obviously needed the medication and needed it fast.
The problem is when your CD4 is that low you can get what we call Immune Reconstitution Inflammatory Syndrome or IRIS. This basically means if there is an opportunisitic infection present, particularly TB or cryptococcal meningitis, when the anti-HIV medications are started and the CD4 increases the illness can be exacerbated and make the person very ill. Because of this, any patient started on antiretrovirals is screened for TB symptoms and other illnesses. If concerned, appropriate treatment is started before initiation of antiretrovirals. The lower the CD4 the higher the risk of IRIS. So because of this girls cough, I wanted a chest x-ray to evalute TB. Also because of a month of headaches I was worried enough about cryptococcal meningitis that I decided she needed a spinal tap. We arranged for her to come back Thanksgiving day first thing in the morning so that I could do the spinal tap, we could review a recent chest x-ray, mom and a treament supporter could go through counselling and we could initiate antiretrovirals. I sent her home with antibiotics for the cough and diarrhea. I also started a nutritional supplement called plumpy nut because she was on the border between moderate and severe malnutrition. Plumpy nut is a peanut based high calorie food that has all the calories, protein, fat and micronutrients that a child needs to grow. The number of packets they need to eat in a day varies depending on their current weight. I also counselled mom about the two week old. Luckily the baby was already on the appropriate antiretroviral medication for prevention of maternal to child transmission because if not it would have been too late to start. Mom is breastfeeding so I reinforced how important it is not to feed the baby anything except breastmilk for the first six months of life. This is because if water, porridge, or anything else is given, it can almost double the risk of transmisson to the baby.
So Thursday, Thanksgiving day, the mother, aunt, child and two week old brother return. We do the spinal tap, which is negative. Her mother and aunt complete counselling so we can initiate. However, she has continued to vomit and have diarrhea. Instead of gaining weight on the plumpy nut she has in fact lost just over two pounds, pushing her solidly into the severe malnutrition category. I tell mom that we can go ahead and initiate the antiretrovirals today, but that I think she needs to go into the hospital for nutritional rehab. Mom is understandably reluctant because somebody will have to stay with the girl in the hospital. Yet, mom has no help at home and she is breast feeding the two week old. She asks if we can trial oral rehydration solution and plumpy nut for a while and then decide. An hour later, I have them come back in. The child has not vomited, but only had a couple bites of the plumpy nut. I again say that I think she should go to the hospital, but if they are not willing that she will need to come back Monday, the next time the satellite clinic is open. Mom then requests more time to see how she is going to do before they decide. Half an hour later, the aunt carrying the baby and the mother carrying the little girl because she is too weak to walk come back into the room and the aunt, in tears, says, "we have decided she needs to go to the hospital". The aunt, despite many other committments I am sure, had decided that she will stay with the child. This child is one of the lucky ones, because it is obvious in all the interactions that her mother and aunt are truly dedicated to doing what they can to get her healthy again. I can only hope that with the antiretrovirals that we started, she will start to gain weight and get stronger so that she can begin to run and play and live the life a four year old should be living. I will try to keep you updated on her status the next few months. She was one of three children ranging from 3 months to 12 years that we admitted for severe malnutrition that day.
Another quick story to illustrate the impact the HIV epidemic has had on extended families. Before moving here I was fully aware that 22 million people were infected with HIV in sub-Saharan Africa. What I did not and probably could not grasp, is how many more millions of people are affected by the impacts of the virus. I had an aunt the other day who was bringing two nephews to clinic for the results of their CD4s. Both children were double orphans meaning they had lost both parents. Both children qualified for antiretrovirals. Upon further questioning, I realized that the children were cousins. They were children from two different siblings of the aunt. When asking if they had other siblings, she told me that she currently is the primary caregiver for 9 orphaned neices/nephews plus her three children.
Now some of the moments that get me through. A few weeks ago, I was standing outside the clinic waiting for a ride to one of the outreach sites. I was chatting with a couple of visiting scholars and doctors when a little girl probably about 8-9 years old comes out of clinic and hands me a picture. The picture is a little girl in front of a house that says "my name is lungile". I think this was all the English she knew, but for the next 10-15 minutes she stood next to me holding my hand or in front of me so that I could put my hands on her shoulders or around her. When it was time for me to leave, I picked up my bag. A doctor had her bag and newspaper sitting next to it. Lungile, trying to help, picks up the newspaper and holds it out for me. I shake my head and say "no". She then trys to pick up the back pack, which is almost as big as she was, for me. I again say, "no". I get one last hug before I am off for the day.
A few days later in clinic there were two little boys probably around five who were running the hall in front of the clinic room I was working in. The first couple times I had come out of the room I had played with them a little. After that every time I came out of my room to go the pharmacy, the emergency room, to get a new patient or whatever, they would trail behind me. This continued all day and at times made me feel like the pied piper leading the pack. At one point I went into ask the nurse manager a question and they followed me into the office. She said something to them in Siswati then turned to me and said "they say they are looking for you". Each time after getting a new patient, they would follow us back to my room. The first few times one of the little boys tried to come into the room with the patients I was seeing. Each time I had to usher him out. After repeating this a few times, he learned and still would trail behind us back to the room, but once we were all in he would close the door for me. It is a common occurence while at clinic to get kids running up to you just for a hug or to hold your hand. One of these hugs is more than enough to make every stressful, frustrating time worth it.
So that was a long post, but if you have made it here to the bottom. Please tomorrow, December 1st, take some time out of your day to remember and remind others of all the people that are infected and affected by the HIV virus around the world.
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3 comments:
Wish we could send you some hugs too! We'll definitely be thinking of you and your patients as well as their families tomorrow.
Thanks for this post. It is so very helpful for those of us in developed countries to get a sense of the hardships of day-to-day life for people infected with HIV in places such as Swaziland. This blog helped me to put into sharp focus just how hard it is to survive, let alone deal with a devastating disease. Thanks Erin.
It is difficult to fathom being a parent dealing with both your child's illness and your own. Your posting today could be a great recruitment tool for the PAC. Please let us know what we could send for you to give the children- DumDums, Playdoh, etc. We love you and are so proud of all of you. Will keep you all in our prayers, but what can we do here to help? Love, Nancy and the Toners
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