Rose has read this post and has given me permission to share it, and to use the real names of her and her sister.
My primary reason for being in Uganda is to conduct research related to malaria and HIV in pregnancy. One of the studies I am involved in is a clinical trial trying to prevent malaria in HIV-infected pregnant women. Women enrolled in the study receive full antiretroviral therapy (ART).
Being enrolled in the study means the women will get much more intensive and individualized care than they would normally get in a government clinic or hospital. Rather than taking 1 or 2 antiretroviral medications (ARVs) to partially prevent transmission, they will receive full ART with 3 drugs, which will suppress the HIV, improve their CD4 counts, and nearly eliminate transmission. They will also have access to a large team of doctors with specialist support, personalized counseling from trained HIV counselors, and transport reimbursement for clinic visits. When they miss visits, we go and find them.
Because of all of these advantages, getting into our study could be lifesaving, and many of the women know it. Women have to fit certain enrollment criteria to be included in the study. Sometimes, the study coordinators have told me, women who have been excluded from the study leave our clinic crying. It is a big deal to be able to enroll.
One of our study nurses, Rose, is a midwife, and she is outstanding. She is a hard worker, very sympathetic, and also has training as an HIV counselor. She used to be a TDH midwife, so sometimes after her work at the clinic is finished, she goes to the TDH Labor Ward to visit and help them out when they are busy.
One day, Rose shows up with her own sister, wanting her to be enrolled. The sister, Safila, has HIV, and it is unclear what her gestational age is, but she appears to be in late second trimester. Rose had to practically drag her sister from the village to Tororo town to be screened for the study. Rose used the promise of the study to convince her sister to come stay with her in town, and knows that the requirements of clinic attendance involved in the study might just be enough to keep her sister there and save her life, and the baby’s.
As we do the ultrasound, Rose stays in the room and watches anxiously. When we announce that Safila is 26 weeks pregnant, Rose sighs with relief – patients can be enrolled up to 28 weeks. Safila is quite stoic, and it’s unclear whether she understands (she speaks some English but Rose often translates for her), but Rose looks like she is going to cry with happiness.
We send off some blood work to make sure all of her levels are ok for enrollment, and tell her to come back in a week. Three days later, the labs come back. Her platelets are extremely low – normal is 150 or greater, and they are 35. For enrollment, they must be 50 or greater. She cannot enroll. In addition, her CD4 count – a marker of the severity of her HIV disease – returns and is extremely low – it is 40. She has AIDS.
I worry about how Rose is going to take the news, but she immediately understands and accepts this. I assure her that, although Safila cannot not enroll in the study, I will continue to follow her personally with support from the specialists in Kampala and San Francisco.
Safila does qualify for ART because of her low CD4 count. Because of the platelets, we are reluctant to put her on the first-line medications, which would include AZT. Options are limited here, and many patients would get Stavudine, a drug that is no longer used in the US (for the most part) because of bad toxicities like permanent nerve damage. Through some serious legwork, I manage to discover that the hospital has a supply of Truvada, which is a newer combination regimen that we do use in the US, and is very good with few toxicities. I am taking the risk that they will run out of Truvada later, but I decide I will deal with that if/when it happens.
I start Safila on Truvada and get updates from Rose on how she is doing. We discuss the bouts of vomiting, and other complaints. We don’t find evidence of any underlying opportunistic infections in our workup. At first, I see Safila weekly to monitor her reaction to the ART. She seems to do well, so we space out the visits to every 2 weeks.
After some time, Rose mentions to me that recently Safila has been feeling worse. She has been vomiting daily for weeks now, and has bouts of diarrhea that come and go. It just so happens that G, an Infectious Disease fellow from UCSF, is visiting, and I take advantage of his presence to get help with management. I have support from my mentors in San Francisco, but it is nice to have someone who can lay hands on the patient.
He gets a more thorough history from Safila and from Rose. We discuss the possible causes of her symptoms. With limited diagnostic tools, we are unable to do a satisfactory evaluation the way we would at home (or even in Kampala). We decide to treat her for both a parasitic gastrointestinal infection and a bacterial one. We prescribe mebendazole and metronidazole.
It is at this visit that I look more closely at both Rose and Safila. They are sisters, but until now I didn’t realize how alike they look. They have the same full lips that appear pursed at rest. They have heart-shaped faces and prominent cheekbones. They have similar skin color, but Rose’s is shiny and healthy, while Safila’s is mottled and dull. Still, after a few weeks of therapy, Safila is starting to perk up. The most dramatic difference between Rose and Safila is that Safila is profoundly emaciated. Her skin clings to her bones, and emphasizes her cheekbones and the angle of her chin. If Safila were healthy, she would look a lot like Rose.
After taking the medications that G prescribed, Rose reports that Safila is feeling better. The vomiting still occurs but is less frequent, and the diarrhea has resolved. However, there is a new problem. Rose suspects that Safila is not taking her medications, at least not every day. Safila consistently refuses to be observed while taking them. She insists on taking tea or eating a specific food with her meds, something that will delay until after Rose needs to leave for work. Safila then ran out of one medication but not the other, and when Rose counted the ARV pills, the wrong number of pills was in the bottle – which could indicate “pill dumping” – when a patient doesn’t take her medicines but then dumps a bunch of pills at once to make it look like she has been taking them.
Rose has tried to discuss this with Safila multiple times, and is feeling worn down. Safila reacts badly to the subject, refusing to discuss it and becoming defensive and rude to Rose. I can sense Rose’s frustration, and also her fears for the baby. Safila’s viral load was quite high before starting ART; if she doesn’t take meds before delivery, she will have a high chance of transmitting to the infant. In addition, Safila’s own health is terrible, and these drugs could really save her life. Without them, she will die soon.
Rose and I strategize on how to talk to Safila. I offer to counsel her further, but Rose knows the language issue will get in the way of having a real, firm conversation about medication adherence. Rose brings Safila to talk with one of the TDH midwives, who gives her a serious talking to about the importance of ART and the consequences of non-adherence. It’s unclear if it helps, but it does improve Safila’s anger surrounding taking the meds.
I get a repeat viral load after 2 months on ART, and it has not decreased. That is not a good sign.
I arrive at work on a Monday morning and Rose tells me that over the weekend, her sister has become paralyzed. I am alarmed, and ask her to tell me what happened. On Saturday, Safila suddenly had severe weakness of her legs, and couldn’t move them at all. On Sunday, she regained a little movement but was still extremely weak and could only walk with 2 people supporting her. I ask Rose to bring her into the clinic.
I am feeling out of my league. I try to examine Safila thoroughly, doing a neurological examination that I remember from medical school. I ask about associated symptoms, test for sensation and strength, and try to work it out. I call two doctors in Kampala for help, and they advise me on additional examinations I can do. I email my mentors in San Francisco. I also contact a friend who is a neurologist for more help.
I get a lot of excellent advice. Unfortunately, most of it involves tests that I don’t have access too, and all of the possible diagnoses have terrible prognoses. The pattern of muscle weakness is very strange, and hard to categorize into one particular phenomenon. The basic labs I send off do not help. The weakness improves over a few days, to the point where Safila can walk supported by only 1 person. When the weakness improves, pain arrives, and Safila complains of a pins-and-needles sensation, especially when walking.
A few weeks later, I hear that Safila has gone into labor. She is preterm – only 34 weeks. I go to see her in the labor ward. Rose is there with her, in a private room on the ward. She is in early labor. Rose is very grateful for my presence; I couldn’t imagine not being there. We discuss the labor pattern and it sounds to me like the midwives are doing everything right. We confirm the timing of the ART and I reassure the midwives to continue with their plan. I also get some advice from San Francisco on what medications to give the baby, especially in light of the fact that the viral load is still high.
Safila will need someone to care for her overnight, but I also know that Rose needs to work. I ask Rose what she is going to do. She says she will sleep in the hospital caring for her sister all night, and then go to work in the morning. Amazing.
The next day, I hear that Safila is close to delivering. When I arrive on the labor ward, Safila is almost fully dilated. The labor pattern is good, and Safila seems to be tolerating labor fine. She is as stoic as ever. I notice that she is able to squat to urinate, which is a good sign of muscle strength improvement.
I know that Rose is going to deliver her sister’s baby, and I am worried that she is going to take risks to do it. The midwives do not have proper gear, and they are constantly exposed to HIV-infected blood. I encourage Rose and the other midwives to be careful, to protect themselves, and remember that their safety is the most important. I can tell that Rose is very concerned about her sister.
Soon, I hear that Safila has delivered, so I rush back to labor ward. Safila is doing ok, and the baby, a girl, is fine too. Very small (1.8 kilograms) but cute, and healthy. Rose looked relieved and thrilled. She tells me the story of the delivery. The baby was breech, and the delivery was very difficult. They had a hard time getting the head out, and nearly had to call me, but then Rose managed to get it out. The baby was tired and required immediate resuscitation, but perked up immediately and was crying well. Rose marveled over how beautiful and perfect the baby was. She is so relieved that the delivery turned out well. I can see the weight lifted from her shoulders.
We agree that Safila should not be discharged too soon, both for her and for the baby. We start the recommended medicines for the baby, and continue Safila’s ART. The next day, Rose approaches me with concern about breastfeeding. Safila’s milk has not come in, and Rose is concerned that it won’t because Safila is so severely malnourished and emaciated. It is a valid concern. In addition, Rose is concerned about HIV transmission through breastfeeding, but it is clear from the data that infants who are not breastfed (especially preterm, low birthweight infants) have a high risk of death. We agree to have Safila continue trying to feed, and I tell her I will look into alternatives, just in case.
The next day, Rose tells me that Safila’s milk still hasn’t come in, and Safila seems to show no interest in trying to breastfed. Rose has started buying cow’s milk and diluting it for the baby. There isn’t really any very good other option, so we stick with that. Once it is established that both mother and baby are doing well and have no signs of infection, I discharge them. I know they will be well cared-for by Rose.
On Monday, Rose stops me in the hallway. She tells me that the baby died over the weekend. I am stunned. I can tell she is upset, despite the Ugandan reserved stoicism. I pull her into a room and ask what happened.
She is clearly overwhelmed and still processing. She tells me that she suspects her sister killed the baby. She recounts the story for me, and I can see what she means. The baby died overnight. It is not clear what happened, but Safila’s response was completely inappropriate. Rose tells me that Safila insisted on sleeping with the baby for the first time, and Rose did not want to separate a child from her mother, so she gave Safila the baby. Safila did not wake Rose for any problems overnight, and in the morning did not say anything at first. After Rose had made tea, Safila told her “Your little thing is dead.”
Rose grabbed the infant and started resuscitation, but it was futile. The infant was long dead. Rose suspects that Safila smothered the baby. Rose tells me that she is not pleased with her own reaction. She became angry with her sister and accused her. As she recounts the story, I can tell that Rose is rethinking everything she did, blaming herself for not seeing it coming. She defends her decision to allow Safila to care for the baby that night – but who would separate an infant from its mother? Rose did nothing wrong – there was no way she could have anticipated this.
I try to consider all possibilities. I explain the phenomenon of SIDS (sudden infant death syndrome). This infant had several risk factors for SIDS – including being preterm and sharing a bed with her mother. In addition, malnutrition could have played a role (although the baby was still quite young to have starved just yet). I can see Rose’s point, that Safila’s behavior is suspicious.
Regardless of whether she killed the baby, her reaction is inappropriate. Not once in the days after the baby’s death did she express sorrow. We discuss this at length, and it is clear that Safila has been suffering from severe depression, probably for years. She seemed detached from the pregnancy all along, although we just assumed it was cultural stoicism. Whereas Rose had poured hope and love into that infant, Safila seemed to have viewed the baby as a burden. Safila had already buried 4 husbands, and seemed to have given up on life. Was this infant a sudden imposition of hope that she didn’t want to have? Was the baby an obstacle to Safila’s passive descent into death?
I try to comfort Rose, but there is only so much I can say. I would like to get Safila psychiatric treatment, and Rose agrees but doubts that Safila would be open to it. There is not much available in Tororo; there is a mental health clinic with nurses, but no real therapy or treatment available. At least we could try. (Later, Rose brings it up, and Safila swiftly declines to discuss the matter.)
In processing the situation, Rose tells me more about her sister’s behavior in the past. Rose admits that she has always thought that her sister was selfish and reckless, including how she cared for her two living children, often carelessly and needlessly exposing them to contracting her HIV. It is amazing to me that given this history, Rose still fought tooth and nail for Safila’s (and her baby’s) life. She dragged her from the village, got her HIV testing, found her treatment, moved her into Rose’s own house (with her family), fed her, cared for her, slept in the hospital with her, and delivered her baby. All of that extraordinary effort was validated when a healthy baby girl was born, and Rose loved that baby immediately.
A few days later, the DNA PCR (HIV test) results return from the baby at birth. The baby was negative for HIV - we had managed to prevent transmission. It is almost sadder to know it.
Every few days, I check in with Rose. She is still caring for her sister. Miraculously, the weakness and muscle pain resolve almost completely soon after the baby died. I am not sure what to make of that, but it is interesting. Rose also seems to have more success at getting Safila to take her meds observed. However, Rose is worried that her sister will return to the village, now that there is no longer motivation (ie. the pregnancy) to continue coming to the clinic.
I go on vacation, and when I return, Rose has news for me. She tells me that her sister died while I was away. Safila decided to go back to her village, despite Rose’s request for her to stay. In the village, Safila stopped taking all her meds, including Septrin, the daily antibiotic that prevents opportunistic infection. One evening, according to the neighbors, Safila seemed well, was talking normally and had taken food and water. That night, she died quietly. They had the funeral while I was still on vacation. I was very sorry to hear I had missed it.
Rose tells me that, despite her resistance, Safila recognized how much effort we had put into helping her. A woman who was with Safila in the village before she died told Rose that Safila had frequently expressed gratitude for the care. She had said, “My sister did everything to help me get better. She even got me a mzungu doctor!” Rose and I laugh about this appreciative comment, but at the same time we are saddened by a truth that we had told each other all along: you can’t save people from themselves.
The next day, there is a note posted on the clinic message board, and a copy of it on my desk. It is a sincere note from Rose thanking those of us who helped her to care for her sister. “This is to thank all the IDRC and TDH staff who stood with me at the time of my sister’s sickness, up to the time of death. May her soul rest in eternal peace. Special thanks go to Dr. Veronica and Dr. Julia for all the efforts they made in an attempt to save her life and to all the entire staff. God bless you indeed.”
It is hard to describe how moved I was by this letter, and by Rose herself. A compassionate woman who cares for people not only because it is her job, but because she truly cares. Although she is employed by the research clinic, she often goes to the Labor Ward after work to help out the Labor Ward midwives when they are overwhelmed. I have seen Rose’s selflessness in action many times. When I told her about a terrible rape case I had seen, she rushed over to console and counsel the young girl herself, and arranged for a social worker to come. When I told her that one of my surgical patients had unexpectedly tested positive for HIV, she accompanied me postoperatively to provide HIV counseling to the woman in the hospital. When the TDH midwives were arrested, Rose went and covered the labor ward for them so that the patients wouldn’t be unattended. Most movingly, she stood by her sister despite a history of bizarre behavior, despite great difficulty and resistance to Rose’s attempts to help her.
I know that Rose is grateful to me, but I am in awe of her: her strength, her selflessness, her loyalty and her resilience. She is an inspiration to me.