Death

That's right. There is no sugar coating of this post. Having worked in Swaziland for two years now, I have developed a number of coping mechanisms to deal with the amount of need, illness and death that I see on a daily basis at the clinic. Sometimes, though, reality slaps you in the face. Today was one of those days for me.

Last week, we reviewed our data and realized we had had 15 deaths in the last two months. In my year and a half at RFM we have had from 1-5 deaths a month. Not only was it the number of deaths though that was alarming, but also the population. In an HIV program, you expect to have high mortality in the first few months of treatment. Recently, though, we have seen a large number of previously stable patients dying. Based on these changes, we decided to do a mortality review. We are only partly through the review of the files, but preliminarily about 66% of patients we reviewed were measles complications. The majority of these had been on HIV treatment and doing well prior to the measles. Another handful we believe was related to drug resistant TB. I learned in medical school about measles and TB, but given how rare these diseases are in the US you underestimate the seriousness of them. Here the normal morbidity and mortality that these diseases cause is only amplified by the HIV coinfection.

Another common comorbidity we see with HIV is malnutrition. We have two ways to treat malnutrition in Swaziland. One is a peanut based outpatient therapeutic feed. The patient goes home with a certain number of packets of a very sweet peanut butter to eat. The number is based on their weight and degree of malnutrition. If there are other complications (vomiting, diarrhea, fever) or the patient has failed therapy at home, then they get admitted for inpatient rehabilitation with a special milk. RFM has an inpatient program. Before we moved to our new clinic, we were spending a lot of time in the children's wards with the malnutrition and TB patients as a main focus. This is because malnutrition, TB and HIV often go hand in hand here. We had worked hard to mentor the doctors and establish testing on the wards. As our clinic became more busy, we had to step out of the wards. For the last few months, we have taken on more of a consulting role for the known HIV positive patients or complicated patients. I think I have been tricking myself into thinking that things are going well on the wards. Today, though, Action Against Hunger, a French NGO, visited RFM to go over the nutrition data for the hospital. I unfortunately was busy, but my colleague brought me back the data. Since January 2010 there has been a drastic increase in the death of our malnourished children and a decrease in the cure rate. It is a pretty dramatic change from the 2009 data. Also, over half of the children had an unknown HIV status, which is devastating to me. I am sure there are many factors contributing to these worse outcomes, but I have realized I cannot ignore it. This trend is unacceptable and I feel a responsibility to help the team figure out how we can turn this around.

All of this was compounded by the death of a baby today whose mother I had become quite attached to. I met the mother in February when she came to us pregnant. She started on the ARV therapy to try to prevent the baby from getting HIV. This was successful. The baby was HIV negative, but after delivery was diagnosed clinically by our former medical director with a rare syndrome called Edwards syndrome. This syndrome is caused by an extra chromosome and is fatal with the majority of children, even in the developed world, dying before their first birthday. The mom is a very bright woman, who on her first visit recited for me everything Dr. Joyce had told her. She on an intellectual level understood the prognosis for the baby. The baby was having trouble gaining weight, but otherwise every time I saw mom was doing ok. She was taking amazing care of him and obviously loved him with her whole heart. Today, she brought him in sick. I knew immediately that he was critically ill. I believe that he had a defect in his heart related to the Edward's syndrome that was doing just enough to sustain his normal life of eating, sleeping, smiling, cooing at mom. It was just too weak to handle any extra stressors, including illness. Realizing that he was dying and knowing his overall prognosis, I gave mom the options of being admitted to the hospital or going home and trying to keep him comfortable. She opted to have him admitted. She is a very young mom and was understandably scared. She said, "I cannot take him home". She initially wanted to have him admitted at the hospital where he was born, but I convinced her he was too sick for the 1 1/2 drive in a bus. She agreed to stay at RFM and I called the wards to see if I could bring him over immediately to get oxygen started. When I got back into the room, he was gasping. I took him from mom to our first triage room for oxygen. I thought he was going to die in my arms, but the oxygen did seem to make him more comfortable and improved his color. I again gave mom the option of holding him in that room with the oxygen or admitting him. She just kept saying, "I knew this was coming, but this is too soon". So we admitted him to the hospital and tried what we could, but he died at four o'clock this afternoon. His mother was devastated and alone. I had called the grandmother and spoken to her boss in order to get her to the hospital, but she unfortunately did not arrive until after he had died. The final straw for me though was that there was no place for this mother to grieve alone because the room that is normally used for such purposes already had another grieving mother in it. We finally got her set up in a room we call the "dark room" so that she could hold him. I stayed until the grandmother came. As I was leaving, I gave her a hug and she told me not to change. I walked out of the wards and the tears came. This is only the second time since coming that I have cried. While I was obviously touched by this particular mother and child, the tears were really for all the women and children of Swaziland who face so much suffering in their lives. I just keep hoping against hope that we will soon see a light at the end of the tunnel.