Carrying to term: Tuberculosis and the Pregnant Body

A doctor treats an elderly Kashmiri woman suffering from Tuberculosis at the Chest Disease Hospital on World Tuberculosis Day in Srinagar, India on March 24, 2014. The stigma surrounding tuberculosis can often result in people—women in particular—being less likely to get themselves tested, or even treated for the disease. AP Photo/Mukhtar Khan
01 October, 2015

In August this year, I visited the chock-o-block clinic at JJ Hospital in Mumbai. As I was sitting in the clinic, a 30-year-old woman was the second patient that day to be diagnosed with female genital tuberculosis—a form of extra-pulmonary tuberculosis that is always secondary to tuberculosis infection elsewhere in the body. It had been less than an hour since the clinic had opened at about 11 am. The woman, desperate to bear a child, joked with the resident doctor examining her, “I will come one day and pick up some child from the hospital. You mark my words.” I found out later that she had been married for about 14 years.

The 30-year-old told me that she had never had a regular menstrual cycle since her periods first began when she 13 or 14-years-old. She was married soon after. “When I got married and came to Mumbai, I realised that my sister-in-law was getting periods every month. I had no idea we were supposed to get it every month. I have been taking medicines to treat this problem. Socho—Think!,” she said. Soon after, she began visitng several doctors—including a few in her hometown at Benaras—to try and understand why she was not able to conceive. More often than not, she would be faced with condescending practioners who did little to help her predicament. “My neighbours taunt me and say I am not able to bear a child. My family also scolds me sometimes, out of love,” she said, before adding, “They are bound to say some things to me, aren’t they?” After she was finally diagnosed that day, she told me that she hoped her disease would not infect others in the house, even though the doctor had informed her that extra-pulmonary tuberculosis was not infectious.

Genital tuberculosis in women is detected by conducting tests on a sample of the endometrium lining. Its symptoms, apart from infertility, include painful sexual intercourse; abnormally long, heavy and infrequent periods; the absence of periods; and abdominal pain. The disease forms close to 12 percent of the total pulmonary tuberculosis cases in India, and represents 15 to 20 percent of the extra-pulmonary cases. Most of these cases are asymptomatic and the diagnosis requires a “high index of suspicion” with experienced clinicians being more likely to spot or diagnose them. The organs that are most commonly affected due to genital tuberculosis are: the fallopian tubes, the lining of the uterus, the ovaries, and the cervix among others.

In India, infertility is the most common symptom of genital tuberculosis among women. According to a study that was published in 2008, around “18 percent of the infertile females in infertility clinics suffer from TB [tuberculosis].” The 30-year-old woman I met was unable to conceive because both her fallopian tubes were blocked due to the tuberculosis, and the doctors did not seem to know for how long. “She is now on anti-TB medicines. We do not know when she got TB. Let’s hope it clears the tubes,” said Dr Ashok Anand, professor of gynaecology at JJ Hospital.

“Whenever a patient complains of infertility we do a TB test using endometrial sampling. If the person’s immunity is good, many times the body handles the infection on its own.” said Dr Kiran Coelho, consulting obstetrician and gynaecologist at Lilavati Hospital in Mumbai. But even a strong immune system is no guarantee of avoiding complications. “TB heals by scarring unfortunately. Therefore, there could be fibrosis of the fallopian tubes leading to a block, preventing the egg or ovum from travelling in the uterine cavity,” she continued. In such a scenario, she went on to tell me, surgery was usually considered, although it is not always possible. In some cases, Jain said, “we can only advise in-vitro fertilisation treatment (IVF) to conceive.”

Part of the difficulty in treating the disease is also a function of the obstacles in diagnosing it. For many patients, the social stigma of infertility is further compounded by the perception around tuberculosis. “Sometimes when I would tell my patients that they have TB, they are [sic] horrified and are [sic] in denial,” said Dr Shelly Batra, co-founder and president of Operation Asha—a non-governmental organisation that works in India and Cambodia to bridge the gap between government medicine distribution centres and affected communities. In most cases, Batra told me, neither the respite from being able to ascertain the cause, nor the knowledge that it could be treated, were enough to combat the negitive connotations of the disease. However, if genital tuberculosis goes untreated, the endometrium lining may get completely scarred, rendering the uterus incapable of holding a pregnancy. In such cases, the doctors can only recommend surrogacy. However, options such as in-vitro fertilisation treatment and surrogacy are not always feasible for the middle and lower classes.

Anand from JJ Hospital told me, for instance, about one of his patients who was suffering from tuberculosis, due to which she had a bilateral tubal block­—blockage in both fallopian tubes. She, he told me, faced a lot of discord in her marital home and “took extensive treatment from us.” The only option she had left was the IVF treatment, but she did not have the money for it. Anand also mentioned that the patient’s husband had threatened to divorce her and and remarry because she was unable to conceive.

Surviving or escaping infertility is not gaurantee of a safe natal experience either. Pregnant women who are immunologically weak are also at risk from female genital tuberculosis. This is associated with a six-fold increase in perinatal deaths (or still births), the risk of premature birth, and the chances of a child being born with low birth-weight. Genital tuberculosis may also result in ectopic pregnancy, during which, the fertilised egg implants itself outside the womb—mostly in the fallopian tube. This can lead to the bursting of the tube, thereby endangering the life of the mother. “I had a patient who delivered, but complained of profuse bleeding, 15 days after.” said Dr Nisha Jain, head of gynaecology and obstetrics at Saroj Super Speciality Hospital, Delhi. Subsequently, Jain realised that the woman had genital tuberculosis. Her newborn and her previous child were born with a cleft lip, a birth defect that Jain believed may have been caused by the tuberculosis given that “she had no other symptoms before this complication.”

Tuberculosis is the one of the leading causes of maternal mortality in India. In Mumbai alone, it was the third highest reason for maternal mortality last year. “TB has been steadily rising as the cause for maternal mortality. In fact, there could be many undiagnosed cases of TB which we do not label as a TB-related death,” said Dr Padmaja Keskar, an executive health officer at the Municipal Corporation of Greater Mumbai. The under-estimation of deaths that are related to tuberculosis in India, can be attributed to the stigma that surrounds the disease. This stigma can often result in people—women in particular—being reticent about getting tested, or even treated for the disease.

“In India, in about 10,000 pregnant women, we have about 25 to 30 women who have TB,” said Dr Soumya Swaminathan, director-general of the Indian Council for Medical Research. Since the incidence of tuberculosis among women increases after child birth, programmes are designed to help rule out the disease during the pregnancy. As a result, Swaminathan told me, doctors who are examining pregnant women have “to tick a box where they ask if the patient has had any persistent fever or cough.”

According to Swaminathan, the peculiar nature of the disease and the stigma associated with it only make the problem worse. Medical practioners and hospitals are successful in treating genital tuberculosis among pregnant women only if the patient is diagnosed early. Delays in diagnosis may render the situation extremely precarious as pregnancies reduce the body’s immunity considerably and put the patient at a higher risk. Swaminathan admitted that while most anti-tuberculosis programmes are equipped to handle tuberculosis in pregnancies, it also dependent on whether the women are actually consulting a doctor and going to the hospital for regular visits. As the District Level Household Survey (DLHS-3) carried out by the International Institute for Population Sciences discovered in 2010, only 47 percent of the births between 2007 and 2008 occurred in a medical institution.

Although it is possible for a woman to have a normal pregnancy and give birth to a healthy child despite tuberculosis, additional care has to be taken during treatment. However, such treatment is possible only when the patient and her family are able to appreciate its necessity. Zahira Begum, a Directly Observed Treatment (DOTS) provider with Lok Seva Sangam’s Govandi clinic in Mumbai was worried about one of her pregnant patients when I met her earlier this year. “She faces so many problems at home. Within a month of being diagnosed with TB she realised she is pregnant,” she told me. Although the patient had been losing weight due to the disease, Begum told me that her family appeared to believe that she was feigning the weakness. “She has already lost 3 to 4 kilos and is now just 49 kilograms. I have counselled the family to take care of her, but they do not seem to care,” she said.

This January, a patient who was in first trimester of her pregnancy, died at JJ Hospital due to excessive bleeding from her chest—an area typically infected during tuberculosis. “If TB is diagnosed late, or if she [an afflicted woman] does not receive proper treatment, it can be fatal,” said Anand. “Even now I have a very bad case of a pregnant woman with TB whose one lung is totally infected,” he told me. Two of his patients recently lost their lives, mostly due to poor nutrition. If proper care is taken, he insisted, a woman can have a relatively smooth pregnancy, and a perfectly healthy child.

The Reporting for this story was supported by the REACH Lilly MDR-TB Partnership Media Fellowship Programme.

Menaka Rao is a freelance journalist from Mumbai. She writes on law and health.