Nyakor* is back in our clinic, again. Her appearance is pitiful; thin, short wiry hair, tattered old clothes. She says she is about 23 years old, her son Chiang* is 4 months old and is losing weight again so needs to be readmitted to the clinic.
Nyakor has had a difficult life. She was born in nearby Mayom County. When she was 15 she was married off to a soldier in return for 40 cows for her family. Her husband was much older than her and his profession involved a lot of moving around. They moved to various places in South Sudan in addition to Uganda. Together they had three children. Last year her husband was killed in a battle here in Unity state. She was nearby at the time. After her husband’s death she was told by one of his relatives that his family would not provide for her and that she should go and search for someone else to look after her financially. A widowed woman with young children and no means to support them would be very vulnerable here. Normally the husband’s family would care for her or his brother would take her as a wife. She faced a difficult choice.
Pragmatically she says ‘So I left to look for somebody else and I found someone, he is a distant relative of my husband, Chiang is the first born child [from that relationship]’. She says she doesn’t know if that man will come back to her or remain with his first wife.
Nyakor says that before she met this man she was healthy but after she became pregnant she became sick with diarrhoea, fever and weight loss. ‘I am thinking for that lady now [the man’s wife], that she is sick also, and that I am better off as I have come for help’.
When Nyakor first came to our clinic over two months ago she was even more desperately thin than now, little Chiang was just 2.2kg and clinging to life. Thankfully over a few weeks he got stronger, put on some weight, started to smile.
During that admission I took Nyakor to the government run Bentiu hospital for voluntary counselling and HIV testing. Her result was positive and she is now on antiretroviral medications. ‘I am becoming stronger, with the medicine though I can get heartburn, nausea, constipation’ as she describes some of the side effects common from HIV medication. I previously worked in Zambia, a country with one of the highest HIV prevalence’s in the world. There, whilst a diagnosis of HIV is always devastating there would be much hope for Nyakor. She would probably have access to a well run HIV programme with guaranteed medication supplies, trained staff, adherence councillors, access to a laboratory to monitor her bloods.
Here things are entirely more difficult. The hospital HIV programme is run by a very hard working counsellor. He works out of a single room and has a limited laboratory he can use. He only has access to one regimen of medications, if the patient has treatment failure or severe side effects he has no alternatives. Supply may not always be guaranteed and he has no medications for children. The only well resourced HIV programme in Unity state is run by MSF in our hospital in Leer, 100km south from here. Road transport between the towns can be difficult to impossible, especially during the rainy season.
With Nyakor’s positive result I was obviously worried for Chiang. Diagnoses of HIV in infants cannot be done with the standard rapid tests used for adults. Thankfully I was able to send a sample for testing to Nairobi and the initial result was negative. But then came a difficult decision. In settings like here women who are HIV positive would ordinarily be advised to exclusively breast feed their child to six months. But given Nyakor’s illness and subsequent poor milk supply Chiang needed supplementary feeding to survive. Mixing formula and breast milk in a young infant increases the risk of HIV transmission so I had to advise Nyakor to take the difficult decision to stop breast feeding.
When Chiang got stronger a few weeks ago, he and Nyakor were able to leave the clinic. She would have to fend for herself in Bentiu, find food to eat for her and the older children (one of whom is now being treated with plumpy nut in our outpatient clinic) as well as provide formula milk for Chiang. It’s no surprise that Chiang has lost weight again though I think if he makes it to six months so he can start solid food he will be OK. Nyakor has a limited amount of insight into her illness and how she contracted it. ‘I just know I have a virus in my blood, that I got through sexual transmission’. She hasn’t fully grasped yet the lifelong nature of the condition and the medications ‘Now I feel strong, maybe I will need to take the medicine for two more months then I can stop’. Thankfully she has developed a good relationship with the counsellor in Bentiu hospital and hopefully in time will begin to understand more fully ‘I feel this may kill me in the future, but from the date you discharge me I will always go for review’.
Nyakor doesn’t have any grand plans for the future. Her dreams are of survival only and she will make whatever difficult choices she has to make to provide for her children. ‘All I want is to build a shelter and try to protect myself, my children and my food’.
*Names changed to preserve anonymity