Some Ugandan women are knowingly risking their lives in order to have children, a new study has found. Thousands of women in the East African country suffer from rheumatic heart disease, which has been largely eradicated in the developed world but is common in developing countries.
Women with the disease who become pregnant can suffer many complications, including blood clots, arrhythmias, heart failure and death. And those who take blood-thinning medications can risk having children born with birth defects.
Yet the cultural imperative to bear children is so powerful that these women are willing to take these risks in order to have a family, said Andrew Chang, MD, who is first author on a newly published study in PLOS ONE on the issue.
“We were shocked how casually individuals would state, ‘A woman who cannot have children is not a woman at all,’” Chang said.
Rheumatic heart disease is a chronic condition that can damage the heart valves and lead to stroke, heart arrhythmias and heart failure, among other problems. An estimated 1.4 million people every year die of complications from the condition. The disease is a consequence of untreated strep throat. In the United States, children with strep generally get antibiotics that quell the bacterial infection, but in the developing world, strep may go untreated because of cost, lack of access to care or a missed diagnosis. The infection then progresses unchecked, often causing damage to the heart.
Chang, now a clinical instructor of medicine, became interested in the issue when he spent several months in Uganda during his Stanford residency in 2016. He teamed up with a group of physicians there and a research unit from Case Western Reserve University to interview 75 young women with rheumatic heart disease about their attitudes on child-bearing, contraception and heart disease generally.
They were stunned by some of the findings. In focus groups, the women all said they feared being shunned because of the disease and the associated fertility risks, and many said they’d rather have HIV than heart disease.
“Tragically, a lot of the patients said they were afraid that if people found out about their disease, their partners would leave them. And quite a few reported they had been abandoned by husbands and spouses and family members, too,” Chang said.
The women considered HIV preferable to heart disease because it didn’t prevent them from having children, he said. Pregnant women with HIV can pass on the infection to their children, but drugs to help prevent transmission are now widely available in Uganda.
Some of the women were on blood thinners because they’d had damaged heart valves replaced, and they were aware that the therapy could increase their chances of hemorrhage during pregnancy or lead to fetal deformities. And yet they were willing to take that risk, the researchers found.
The researchers concluded that there was a need for programs to provide counseling to these women and their family members, as well as medical services to help monitor their conditions. Chang and his Ugandan colleagues have since helped to establish the country’s first Women’s Heart Center, a multidisciplinary effort to help fill this gap and increase public awareness to fight the stigma of heart disease in women.
Photo by Annie Spratt