Growing community of breast milk donors in Uganda gives mothers hope

Lelah Wamala a mother of three, uses a pump to express breastmilk at her home in Kampala, Uganda Tuesday, May 21, 2024. Wamala who twice has donated milk, said she was spurred to act while having a baby in 2022, she saw mothers whose premature babies were dying because they didn’t have milk. (AP Photo/Hajarah Nalwadda)

KAMPALA, Uganda — Early last year, Caroline Ikendi was in distress after undergoing an emergency Caesarean section to remove a stillborn baby and save two others. Doctors said one of the preterm babies had a 2% chance of living.

If the babies didn’t get breast milk — which she didn’t have — Ikendi could lose them as well.

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Thus began a desperate search for breast milk donors. She was lucky with a neighbor, a woman with a newborn baby to feed who was willing to donate a few milliliters at a time.

“You go and plead for milk. You are like, ‘Please help me, help my child,'” Ikendi told The Associated Press.

The neighbor helped until Ikendi heard about a Ugandan group that collects breast milk and donates it to mothers like her. Soon the ATTA Breastmilk Community was giving the breast milk she needed, free of charge, until her babies were strong enough to be discharged from the hospital.

ATTA Breastmilk Community was launched in 2021 in the Ugandan capital, Kampala, by a woman who had struggled like Ikendi without getting support. The registered nonprofit, backed by grants from organizations and individuals, is the only group outside a hospital setting in Uganda that conserves breast milk in substantial amounts.

ATTA, as the group is known, receives calls for support from hospitals and homes with babies born too soon or too sick to latch onto their mothers’ breasts.

More than 200 mothers have donated breast milk to support over 450 babies since July 2021, with over 600 liters of milk delivered for babies in that period, according to ATTA’s records.

In a measure of efforts to build a reliable community, many donors have given multiple times while others help to find new ones, said ATTA administrator Racheal Akugizibwe.

“We are an emergency fix,” Akugizibwe said. “As the mother is working on their own production, we are giving (her) milk. But we do it under the directive and under the support of a lactation specialist and the medical people.”

She added: “Every mother who has given us milk, they are kind of attached to us. They are we; we are them. That’s what makes it a community.”

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ATTA makes calls for donors via social media apps like Instagram. Women who want to donate must provide samples for testing, including for HIV and Hepatitis B and C, and there are formal conversations during which ATTA tries to learn more about potential donors and motivations. Those who pass the screening are given storage bags and instructed in safe handling.

Akugizibwe spoke of ATTA’s humble beginnings in the home of its founder, Tracy Ahumuza, who would store the milk in her freezer. Ahumuza started the group amid personal grief: She hadn’t been able to produce breast milk for her newborn who battled life-threatening complications. Days later, after the baby died, she started lactating.

She asked health workers, “Where do I put the milk that I have now?'” Akugizibwe said. “They told her, ‘All we can do for you is give you tablets to dry it out.’ She’s like, ‘No, but if I needed it and I didn’t get it, someone could need it.’”

In the beginning, ATTA would match a donor to a recipient, but it proved unsustainable because of the pressure it put on donors. ATTA then started collecting and storing breast milk, and donors and recipients don’t know each other.

Akugizibwe said the group gets more requests for support than it can meet. Challenges include procuring storage bags in large quantities as well as the costs of testing. And donors are required to own freezers, a financial obstacle for some.

“The demand is extremely, extremely high,” Akugizibwe said, “but the supply is low.”

Lelah Wamala, a chef and mother of three in Kampala who twice has donated milk, said she was spurred to act when, while having a baby in 2022, she saw mothers whose premature babies were dying because they didn’t have milk.

Being a donor is a time-consuming responsibility, “but this is the right thing to do,” she said.

Via motorcycle courier on Kampala’s busy streets, breast milk from donors is taken to ATTA’s storage and delivered to parents in need.

Donated breast milk is pasteurized before being prepared and frozen for mothers who may need it, seen in a freezer in Kampala, Uganda, Thursday, May 16, 2024. A community of breast milk donors has formed in Uganda after women struggled with finding ways to keep their babies with health issues alive. The nonprofit is the only group outside a hospital setting in the East African country that conserves breast milk in substantial amounts. (AP Photo/Hajarah Nalwadda)

ATTA’s goal is to set up a full-fledged breast milk bank with the ability to pasteurize. The service is necessary in a country where an unknown number of women suffer for lack of lactation support, said Dr. Doreen Mazakpwe, a lactation specialist who collaborates with ATTA.

Mazakpwe cited a range of lactation issues mothers can face, from sore nipples to babies born too sick or too weak to suckle and stimulate milk production.

If both mother and baby are healthy, “this mother should be able to produce as much milk as the baby needs because we work on the principle of supply and demand,” said Mazakpwe, a consultant with a private hospital outside Kampala. “So, in situations where there’s a delay in putting the baby on the breast, or the baby is not fed frequently enough … you can eventually have an issue where you have low supply.”

Mazakpwe said she advises mothers on how to establish their own supply within about a month of receiving donated breast milk, and sometimes all that’s needed is to hold the baby the right way. When mothers start lactating, it frees up supply for new ones who need ATTA’s help, she said.

Akugizibwe said their work is challenging in a socially conservative society where such a pioneering service raises eyebrows. Questions, even from recipients, include fears that babies who drink donated breast milk might inherit the bad habits of their benefactors.

In addition, “if you don’t breastfeed there is a lot of negativity,” said Ikendi, whose premature babies survived on donated milk. “Society looks at you as though you’ve just literally refused to breastfeed.”

She spoke of struggling even when she knew she had no choice after seeing her babies in the intensive care unit for the first time. Through the glass she saw they were so tiny, on oxygen therapy and bleeding from their noses. The babies, a boy and a girl, had been removed at seven months.

Ikendi’s babies received donated breast milk for two months.

One recent morning, an emotional Ikendi held her children as she described how the donated milk “contributed 100% to our babies’ growth.”