Should mothers living with HIV breastfeed their babies? 

During our recent annual conference, we held several interesting sessions about breastfeeding, welcoming Tanvi Rai and Bakita Kasadha from the Nourish UK study, and also Shema Tariq to give an update on the new BHIVA breastfeeding guidelines. What did we learn? 

The question of whether to breastfeed a child is a big decision for many mothers living with HIV. Whilst the chance of transmission through breastfeeding is very low for those on ART, it’s not quite at zero. We can’t say U=U for breastfeeding. This is why, in highly resourced countries like the UK, guidance recommends the use of formula milk instead. 

Why can’t we say U=U? 

Shema Tariq, who’s been leading on writing the updated BHIVA guidelines on this subject, took us through a few facts on U=U and breastfeeding. We know there have still been some cases of transmission, even when maternal viral load was less than 100. And we don’t know enough about whether ART reduces cell-associated virus in the milk, if ART levels are sufficient in human milk, or the effects of ART on infants. 

What factors increase the risk of transmission through breastfeeding? 

  • Acquiring HIV whilst lactating
  • High plasma and human milk HIV viral load
  • Breast conditions such as mastitis, cracked nipples or thrush
  • Oral lesions in the baby, including oral candida 
  • Longer duration of breastfeeding
  • Mixed feeding 

Letting parents choose

But this doesn’t mean women living with HIV shouldn’t have the choice. Indeed, BHIVA guidance has been updated to say women who are virologically suppressed on ART, with good adherence and who choose to breastfeed may be supported to do so. But they should also be informed about the low risk of transmission of HIV through breastfeeding in this situation and the requirement for extra maternal and infant clinical monitoring. Of 9133 deliveries to women with diagnosed HIV in 2012-2020, 1.8% were reported as supported to breastfeed, and there were zero transmissions. 

Shema shared a quote from one woman who chose to breastfeed beyond six months:

“Deciding to breastfeed while living with HIV was the hardest decision I have ever had to make in my life, as my priority was always the health of my child. It turned into one of the best decisions I have ever made.

“Breastfeeding is one of those things that is really hard to articulate to someone who hasn’t been on that journey before. It was a magical, empowering, tiring, exhausting connection, and most days I felt like I had an absolute superpower – in my bra!”

Nourish UK: Asking parents directly 

The Nourish UK study, completed in November last year, tried to get more of an idea of how new parents felt about this issue. They spoke to 36 mothers and two male partners. 28 were post-partum and the majority of those had decided to formula feed (20). Of the eight pregnant women, four were planning to breastfeed, two had opted for formula and two were still undecided.  

What were the results?

In terms of motivations, the majority of those wishing to formula feed were doing so to avoid HIV transmission. For those who chose to breastfeed, the most common motivations were the health benefits, bonding, and the cultural and personal expectations of motherhood.

“I realised breastfeeding was going to be a lot of stress for me and the baby. So the best option was to formula feed. There wasn’t enough evidence out there to show that I cannot pass it on to her. I wasn’t really ready for that stress.” 

–Pauline, Nourish UK interviewee

The interviews also showed that even though there have been changes in UK guidelines around being supported to breastfeed if you have an undetectable viral load, these are not reflected in the experiences of women. There seemed to be limited awareness of the updated BHIVA guidelines from medical staff, with some participants reporting being actively dissuaded and discouraged from breastfeeding despite meeting the criteria. 

It was also shown that there was inconsistent access to formula provision. Half of the women the Nourish UK team spoke to reported that they were unable to afford basic expenses. So access to this provision could have a huge impact on the decision of whether to breastfeed or not. 

The Nourish UK team recommend: 

  • Providing practical breastfeeding support to new parents
  • Standardising and improving the access to formula milk provision, meaning affordability will not be a factor in decisions
  • Giving appropriate training to all healthcare professionals supporting mothers and birthing parents with HIV, and updating them on the BHIVA guidelines. This would mean more consistent advice was given throughout the prenatal and postpartum  journey.  

Find more parents’ voices and read about the Nourish UK study here