One of life's biggest regrets for Flavia Ndagire is missing out on the first flush of love that fills motherhood.
The 28-year-old Ugandan, unaware that her body was being ravaged by tuberculosis, felt so weak at the time that she wasn't even able to experience the joy of holding her newborn son.
What should have been a precious first few months with baby Elijah turned into a nightmare of health complications induced by TB and the fear of infecting her child.
"I was breastfeeding, but my milk would dry up. He was always hungry, and I was too sick to care for him properly," Kampala-based Flavia tells TRT Afrika, her voice still carrying the faint rasp of her illness.
"The worst part was living in fear all the time. Every time I coughed, I turned away from Elijah's face, terrified of passing on the disease to him. I felt like I was failing him as a mother."
The exhaustion Flavia had initially blamed on new motherhood gave way to night sweats, fever and weight loss that left her too weak to cradle Elijah.
Tests confirmed tuberculosis, placing Flavia among an estimated 200,000 pregnant or postpartum women globally who develop TB each year.
Dangerous exclusion
Inexplicably, pregnant and breastfeeding women have been routinely left out of clinical trials for new TB drugs, diagnostics and vaccines for decades.
This consistent exclusion, as evidenced by data available from the World Health Organisation (WHO), leaves doctors without crucial evidence to determine how to treat these patients safely and effectively.
WHO has since issued a consensus statement demanding an end to the practice of keeping pregnant and postpartum women with TB outside the ambit of research.
Healthcare experts consider this a fundamental step towards equitable care rather than an afterthought.
"The benefits of TB research must flow to all people with the disease, including pregnant and lactating women," says Dr Tereza Kasaeva, director of WHO's department of HIV, TB, hepatitis and sexually transmitted infections. "It's time to prioritise evidence-based care."
Impossible choices
Dr Okechukwu Nnamdi, a Nigerian physician who has treated countless mothers like Flavia, faces agonising decisions without adequate data to guide him.
"We are often taking shots in the dark. When a breastfeeding mother presents with drug-resistant TB, I have to weigh the potential unknown risks of a newer drug to her infant against the certain, deadly risk of her untreated disease," explains Dr Nnamdi.
"This is an impossible choice. We need clear data on drug safety, dosing and efficacy, specifically for this population. Their lives, and the health of their babies, depend on it."
WHO's framework explicitly sets out what needs to be done to right this wrong.
Researchers and regulators must close data gaps, begin safety studies and include pregnant and lactating women in all stages of TB drug and vaccine trials. Legal and ethical barriers need addressing, too. Affected communities must be part of the research, the framework states.
Fighting back
Flavia, now on treatment and recovering with her healthy son, believes change cannot come soon enough. Her journey through TB treatment was marked by anxiety and uncertainty that better research could have prevented.
"We are not side notes. We are mothers fighting to stay alive for our children," she tells TRT Afrika, holding Elijah close.
"We deserve medicines that are proven safe for us. We deserve to know that we can breastfeed our babies without fear. We deserve to be seen."
