RHD is a condition in which the heart valves are damaged by RF, an inflammatory disease which occurs most often in children aged between five to 15 years old. Children who develop RHD will be affected by it for the rest of their lives, and incidences are much higher in women than men. Moreover, 50% of RHD sufferers do not remember ever having RF, making the prevention of RHD in developing countries difficult due to the reduced access to healthcare as compared to high-income countries.
RF begins with a simple common bacterial infection of the throat (streptococcal throat), and can affect the body’s connective tissue, particularly the heart, joints, brain, or skin. The reality of the disease is harsh – it is the epitome of a “disease of poverty,” as the transmission of the bacteria, streptococci, is easiest in areas which are overcrowded and with bad hygiene standards. While the science of the disease has been discussed regularly by experts all over the world, the social factors affecting sufferers of RHD in the developing world are rarely considered.
Bhagawoti Chaulagain, 26, married at the age of 16, was diagnosed with RHD eight years ago. At the time, she was five months pregnant with her first child, and had been experiencing shortness of breath, heart palpitations, and then developed a chronic cough. Her doctor warned her that giving birth to the child would seriously endanger her life.
“I told the doctor to save my baby’s life, not mine if it came down to it, but the doctor said he wouldn’t do that,” she says during a routine appointment at Dhulikhel Hospital.
Bhagawoti visits the hospital every 21 days to receive her antibiotic injections. She will need these injections for the rest of her life. Now a mother of two; an eight year old girl and a boy of four, the obvious question to ask is why she endangered her life not once, but twice.
“I don’t want to be the source of my family’s and husband’s unhappiness,” she says in a matter-of-fact manner, as she fidgets with the edges of a plastic bag in her lap. Bhagawoti had been pressured by her in-laws to conceive again, in the hope for another male successor. Her husband had said that while he loved her, he would be forced to take a second wife if she did not comply. Bhagawoti’s own family also encouraged her to conceive again, while knowing the life-threatening risks she would be put under, as they did not want to bear the shame of their daughter having to share a husband with another woman.
And just like that, the true reality of being a female sufferer of RHD in Nepal rears its ugliest head. For the 1.24 of every 1,000 women who suffer from RHD in Nepal, this is a problem most will face after marriage. Despite entire families being warned of the dangers a mother is put through in the event of giving birth to a child in an RHD condition, the social stigma of not producing a male heir is considered too shameful, particularly amongst poorly educated, low-income families.
Sitting in the waiting room of the cardiology department are two other mothers waiting for their routine penicillin injections. Shabitra Karki, 30, is a mother of three, two girls aged 12 and eight, and a boy aged six. Like Bhagawoti, Shabitra put her life at risk by continuing to conceive until she gave birth to her son. Initially, she says she was diagnosed with RHD 10 years ago, but when asked why she continued to have children knowing the danger she put herself in, she wrings her hands and replies, “Actually, I can’t remember if it was 10 years ago or four years ago...”
Yasodha Nepal is a 25 year old mother of two and was diagnosed with RHD five years ago. Her two daughters are aged four and three, but she says assuredly, “I won’t have any more children – even though my mother-in-law and sister-in-law keep asking!”
Yasodha is an incredibly rare example of a rural woman who has the courage to speak her own mind, and recognises that a husband who loves her will not ask her to endanger her own life for his or his family’s approval. As she sits with a shawl wrapped around her upper body, she talks animatedly to Bhagawoti and Shabitra, who smile, laugh, and occasionally chime in.
The strength and poise of these women may go unrecognised by themselves and their families, but an observer from the outside would easily be able to pick up on their beauty, a beauty which comes from what they alone have experienced, as sufferers of RHD, despite the burden of their daily lives.
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