Infant feeding a nightmare for Uganda’s HIV-positive mothers

Martha (not her real name), 42, is HIV-positive and heads an HIV/AIDS advocacy NGO. She is not the typical Ugandan woman because she is educated, and has a job and a regular income. And because of that, she was able to attend antenatal care (ANC) and deliver at a well-equipped private hospital in Kampala, and feed her baby on infant formula milk. Her son is now two years old and HIV-negative.

Despite her’s being one of Uganda’s rare success stories of prevention of mother-to-child HIV transmission (PMTCT), Martha would not advise any HIV-positive mother to opt for formula feeding.


“It was the most trying moment of my life; I kept regretting why in the first place I had opted for formula,” Martha recalls. “When I was told a tin of formula costs between 16,000 and 26,000 shillings, I thought I could afford. But it turned out that a tin could only last a couple of days and maintaining hygiene was so taxing and far more expensive than the formula itself… It became increasingly difficult to sustain… A time came when we had to choose between formula for the baby and food for the family!

“Each feeding requires a fresh mix, which means hot water must be available all the time – rain or shine; power or no power; day or night. You need so many feeding bottles because each feeding needs a fresh bottle… they must be thoroughly cleaned and boiled to kill germs – and this happens around the clock.

“A time came when I could not work anymore because at night I wasn’t sleeping. During load-shedding, the house would choke with paraffin fumes by morning after burning the lamp overnight. When I look back at what I went through, given another chance, I would rather go for exclusive breastfeeding.”

Martha’s experience illustrates one of the biggest weaknesses in the implementation of the PMTCT programme in Uganda. Where the most effective combination of antiretroviral drugs (ARVs) and professional attention have been available, it has been possible to minimise transmission during pregnancy and delivery.

However, among HIV-positive mothers of all income levels, infant feeding has remained problematic, and may be accounting for the biggest portion of the over 25,000 mother-to-child HIV infections that are estimated to occur in Uganda every year.

For long, it was assumed (even by WHO) that replacement feeding was preferable to breastfeeding for HIV-positive mothers. The same thinking was behind the PMTCT policy guidelines that the Ministry of Health published in August 2006.

Thus, until these guidelines were amended in January this year, health workers promoted replacement feeding and advised HIV-positive women to breastfeed exclusively for six months only where replacement feeding was not acceptable, feasible, affordable, sustainable and safe (AFASS).

That thinking has however since changed. It began with a study conducted in South Africa that found no significant difference in HIV infection rates among babies that had been fed on formula and those who were breastfed exclusively for six months, and yet there were higher occurrences of other infections among children who were on replacement feeding (due to lapses in hygiene and deprivation of the immune-boosting benefits of breast milk).

Reality has demonstrated that while formula may be acceptable for a modern family with means like Martha’s, it is not affordable, it is not feasible, it is not sustainable, and it is only safe at very high effort levels. In developed countries, governments provide free infant formula for HIV-positive mothers. In Uganda, there is no such privilege, yet an average family has far less capacity to afford it.

A typical Ugandan woman on the other hand, lives a hand-to-mouth lifestyle, does not have a regular source of income, and may be a single parent or may have a poor, peasant partner who may not even be that supportive. What is nearest to what she can afford is exclusive breastfeeding.

Scientific evidence and reality prompted the latest recommendation (2006) of the UN (WHO, UNAIDS and UNICEF), which advises HIV-positive mothers who cannot afford to safely sustain formula feeding to breastfeed exclusively for six months. The Ministry of Health has adopted this recommendation in the amended position in the infant feeding guidelines published in January 2009.

Unfortunately, the new guidelines are yet to be widely circulated, and health workers and counsellors sensitised to implement them at all PMTCT centres. The quality of counselling itself will need to be improved significantly, to ensure that HIV-positive mothers clearly and fully understand the two recommended options and the implications of each, in order to make an informed choice.

Whether a mother chooses replacement feeding or breastfeeding, exclusivity is stressed because any other supplementary foods or fluids tend to make micro wounds on the baby’s tender intestinal lining, making it easier for HIV from breast milk or other infections to find their way into the baby’s blood stream.

Again, exclusive breastfeeding is recommended to stop at six months, because then the baby is teething and may make micro wounds on the mother’s nipples, through which the mother’s blood may mix with the breast milk it is suckling, and thus increase the risk.

The problem is that most women, families and relatives, especially in rural areas, are not well counselled on this or do not understand the importance of exclusivity. For instance, a visiting mother-in-law can innocently give some of her soup to the baby, and the mother may be too weak to stop her.

In a May 2009 survey report, “Failing Women, Failing Children: HIV Vertical Transmission and Women’s Health”, New York-based International Treatment Preparedness Coalition (ITPC) shows, among other things, that there is poor understanding of the recommended infant feeding options among counsellors as well as HIV-positive mothers.

And the current food shortage, particularly in the East and North of the country, seems to be affecting HIV-positive mothers disproportionately, and compromising their ability to adhere to exclusive breast feeding.

The ITPC report observes: “HIV-positive women reported feeling they could afford neither (exclusive) breast-feeding nor replacement feeding because of their own poor nutrition and financial barriers, leading them to more risky mixed feeding...

“On the ground, among the women interviewed, there was a feeling among pregnant women that their breast milk was insufficient due to moderate malnourishment, and they were likely to try to supplement it with other feeding, a step that eliminates the risk-protective factor of exclusive breast-feeding.”

ITPC reports that Uganda has achieved a commendable level of HIV awareness, but HIV-related stigma remains a serious problem. “At the community level, HIV-related stigma limits a woman’s freedom to choose how to feed her infant because, given the cultural norm of breast-feeding, it is often assumed that a woman who does not breast-feed is HIV-positive. Even if they are in fact positive, many women do not want their status assumed or known in their communities.

“As one NGO worker observed, ‘A mother might make a decision to stop breast-feeding early, but when her mother-in-law visits she will breast-feed again.’

“In Lira, northern Uganda, respondents reported that women in the prevention of vertical transmission programme were rejecting jerry cans provided by a charity because others in the community teased and avoided those seen fetching water in them.

It is should be recalled that every woman, whether HIV-positive or not, has a right to have a child if and when she wants; and she is entitled to PMTCT and ART services when she chooses to have a child.

ITPC quotes HIV-positive mothers reporting that they sometimes feel harassed by health workers who “treat them as though it were a crime to conceive after (they) knew (they) were HIV-positive”.

The uptake of PMTCT services has generally been poor in Uganda and these findings suggest that we are unlikely to halve the proportion of children acquiring HIV from their mothers as envisaged in the National HIV and AIDS Strategic Plan 2007/08-2011/12. On the issue of infant and maternal feeding for HIV-positive mothers, the plan was to integrate food and nutrition support into PMTCT and maternal and child health programmes, but this is not visible yet, two years into the implementation of the national strategic plan.

Vertical transmission of HIV (mother-to-child transmission) has been virtually eliminated in developed countries because of their ability and will to provide HIV-positive women with testing, counselling, comprehensive prevention and treatment, including the best drug therapies available, and supporting HIV-positive women to minimise risky infant feeding practices.

The implementation of the PMTCT programme in Uganda certainly requires improvement in a wide range of the areas, including completing the planned roll-out of services to all health centre III’s, equipping laboratories, eliminating medicine stock-outs, recruiting and retraining more health workers and counsellors, and prevention of unwanted pregnancies, access to antiretroviral treatment (ART) for all eligible women, and fighting stigma at community level and within health centres. But above all these – and more urgently – every HIV-positive mother who cannot afford formula and its demands should be helped to adhere to exclusive breastfeeding.