Prevention in Focus

Spring 2018 

Views from the front lines: Pregnancy and infant feeding

We spoke to three service providers about how they talk to HIV-positive clients about the risks of HIV transmission during pregnancy and breastfeeding.

  • Mona Loutfy, Professor, Women’s College Hospital, University of Toronto, Toronto, Ontario
  • Nicci Stein, Executive Director, The Teresa Group, Toronto, Ontario
  • Precious Maseko, Co-Chair, Ontario AIDS Network, Community Activist

Mona Loutfy

You are a physician who works with HIV-positive women who are pregnant and with new HIV-positive parents. In Canada, messaging around breastfeeding is often that “breast is best.” However, since breastfeeding introduces a risk of HIV transmission that can be avoided, it is not recommended for HIV-positive mothers in Canada to breastfeed. Instead, Canada and other high-income countries currently recommend exclusive formula feeding from birth. In practice, how do you effectively communicate this information to new parents?

The topic of infant feeding options always comes up in our work with women or couples who are considering pregnancy or are expecting a baby. This discussion has changed quite a bit over the past 17 years that I have been seeing HIV-positive patients.

Until about five years ago, as a physician, I would practically wag my finger at the pregnant person and say “no breast feeding! Exclusively formula feed.” Our approach to discussing infant feeding has changed a lot, evolving along with our understandings of HIV transmission and along with our evolving approach to the doctor–patient relationship. Today, this is a much more open discussion. There is a movement among providers in general for more shared care decision-making around the topic. We work together to support the patient(s) to make their own decision around infant feeding.

As early in the pregnancy as possible, we start by talking to the woman and family about their thoughts on infant feeding. I review the research data on HIV transmission and breast milk with them. I explain what this data is – the systematic reviews, the basic science – and that it is not actually very helpful for us (as you summarized in the article). I summarize this evidence for the patient and say that the risk for transmission through breastfeeding is likely very low, but not zero. The reality is that we have had a couple of women on treatment with a fully suppressed viral load who have breastfed and did not transmit the virus, but the risk is not zero. We talk about the Canadian recommendation to exclusively formula feed and why this recommendation exists. We talk about the fact that we can’t say that “undetectable = untransmittable” in the context of breastfeeding and we tell them that Ontario has a very good program that provides free formula.

We then talk about how they feel about breastfeeding and how they can bond with their baby if they choose not to breastfeed. In the past five years or so, this sort of open discussion has been more the norm.

And in the past two years or so, I have seen yet another change: I am receiving referrals – women coming to me who are interested in considering breastfeeding. This phenomenon seems to have emerged along with the 2016 WHO guideline on infant feeding and HIV, which recommends breastfeeding for all infants born to women living with HIV for 12 months (the opposite recommendation of the Canadian guidelines). The WHO guideline is mostly written for countries with a high prevalence of HIV and high rates of infant death associated with diarrheal infections associated with contaminated drinking water. Nevertheless, women hear about this guideline and want to know the relevance for them, as mothers living in Canada.

If women choose to breastfeed, which happens in a limited number of cases, there are a number of things that they must do to keep the risk of transmission as low as possible. We need to explain all of this before she makes her decision. But ultimately, if we don’t approach this conversation openly, some of these women may go ahead with breastfeeding and not tell us, which would lead to more risk for the babies. Women need to feel empowered in their own decision-making and know what their options are.

Most importantly, we have to approach this discussion with an empathetic frame of mind. Being pregnant is stressful enough; adding discussions of infant feeding and HIV transmission adds yet another layer of stress. My patients come to me expecting me to have done my homework – to know the literature and understand what the evidence is telling us. I ensure that I have done that and do my best to convey this information. Support should be offered to women regardless of their choice.

And with the very open discussions that we have, in over 95% of the cases, women choose to formula feed. Even if they experience sadness with not breastfeeding, they most often articulate this choice as supporting their baby’s health.

What are some of the biggest challenges faced by new parents in implementing the infant feeding strategy of their choice? What strategies have you witnessed or supported that HIV-positive parents employ to overcome these challenges?

In a small number of cases, women choose to breastfeed after these discussions. This is not an easy endeavour. To breastfeed, the woman must be supported by a care provider who understands their choice (and who won’t call child protection services, which they absolutely should not do). She needs to be on antiretroviral treatment, and have her viral load at an undetectable level. We need to engage in more counselling sessions than we normally would, and she needs to meet with the pediatric infection specialist, who also provides counselling. She needs to be prepared to give more medications to her baby than would be required if she formula fed, and after the birth she needs to meet with me monthly to monitor her adherence and viral load and every two weeks with the pediatric specialist for blood work. This specialist will put the baby on triple therapy (versus one pill if formula fed). The mother needs to understand all of this before giving birth and making the choice to breastfeed. There may also be a lot of judgment in the HIV community related to choosing to breastfeed. The woman needs to understand this and consider how she will handle it.

For women who choose to formula feed, one practical strategy to support this decision happens in the hospital: often these women are given a medication that suppresses breast milk production, which prevents engorgement. Limiting the production of breast milk can be very comforting to the woman if she is going to formula feed.

There are also other longer-term challenges associated with formula feeding: often culturally, women are expected to breastfeed. If she doesn’t, this can lead to involuntary disclosure of her HIV status. We very often need to prepare women and their partners for formula feeding and dealing with questions and pressure from various members of their communities. We ask women to think about what they will say – what will you tell people? Often, these women need to lie – to protect themselves and their family. Women sometimes have to avoid people and situations where they might be questioned. That is very unfortunate.

In the end, it is important to understand that this is a happy moment – a woman or family is having a baby, which is a miracle in its own right. While it is complex and time intensive to provide and listen to the counselling, in the end we hope it results in an informed, shared decision that the woman or family feels happy about and that they feel supported in the process.

Nicci Stein

You work with an organization that supports HIV-positive parents and their families. What are important factors to consider when speaking to parents who are pregnant or wanting to conceive about HIV treatment, HIV transmission and infant feeding?

Given our new knowledge about HIV treatment and HIV transmission and the high profile of U=U (Undetectable = Untransmittable), the relationship between infant feeding and HIV transmission is also being discussed among women living with HIV. In the context of U=U, parents-to-be and new parents need more information about these issues

But, there is no one-size-fits-all way to discuss this issue. Like anything in the counselling realm, you have to meet people where they are at and support them to explore the issues that are important to them.

Our organization, The Teresa Group, is a community-based organization serving children affected by HIV and AIDS and their families. We see a broad range of women in different situations and contexts, who also bring different levels of treatment literacy. How we talk to women about infant feeding, HIV treatment and HIV transmission depends on the level of knowledge that they have around these issues. Some women have a very high degree of HIV knowledge and treatment literacy, and knowledge of the political issues going on in HIV. Some other women know very little about HIV. Some women only talk about HIV with their doctors and are not connected to broader social movements focused on HIV. As service providers, we are in a privileged position in that we have access to information about issues like U=U and infant feeding; it is our responsibility to pass along all of this information – and this often takes a long time. How this discussion evolves varies based on the knowledge that women bring to these conversations.

The conversation about these issues also depends on the stage of pregnancy or parenthood that the women are at when we first meet them. Some women first come to us when they find out that they are pregnant. Other women contact us when they are literally in labour, on the advice of the nurse or healthcare provider attending the birth. How we talk about infant feeding may vary based on how early in the pregnancy we get to start these conversations. In Canada there is a recommendation that HIV-positive women exclusively formula feed, not breastfeed. If women are unaware of this recommendation, it can be a shock to learn and it often takes a long time for them to wrap their head around this. Imagine – some women haven’t disclosed their HIV status to anyone in their family. It can take time to figure out how they are going to handle this.

Where a woman is from or where her community is from can also impact the conversation about these issues. As you know, there are different recommendations around infant feeding among HIV-positive women in high-income vs. low-income countries. Often we work with mothers who have had an infant in another country who were told to exclusively breastfeed, in line with the international guidelines. Then they come to Canada and have another child; they find that the recommendation is completely the opposite: they are told to exclusively formula feed. Some women have HIV-positive friends who breastfed their babies when they lived in their home country. This can be pretty confusing. Women may wonder if they are being discriminated against!

This all takes a long time to explain and work through. If we start to engage with a woman very early in her pregnancy, we have so much more  time to go over all of these issues. It is a  challenge when we are contacted during delivery – the new mother just doesn’t have the time to digest all of this. But it is most difficult when a woman is diagnosed with HIV during pregnancy. These women are struggling to deal not only with their pregnancy but also the news that they are HIV positive, and then the reality that breastfeeding is not recommended for them. With the majority of our clients, we spend a lot of time, over weeks or months, supporting them to understand and wrap their heads around it all.

In Canada, messaging culturally and from the healthcare system around breastfeeding is very often that “breast is best.” However, since breastfeeding introduces a risk of HIV transmission that can be avoided, for HIV-positive mothers, Canada and other high-income countries currently recommend exclusive formula feeding from birth. In practice, how do you effectively communicate this information to new parents?

I think that part of the difficulty with this is the positioning of the decision to formula feed or breastfeed as a balanced or equal choice – it is not. The reality is that formula feeding offers zero chance of HIV transmission and breastfeeding does not. We never just tell women what they have to do in this regard, but we cannot position it as a balanced choice when that is not the case.

As I mentioned earlier, there are different recommendations for infant feeding in the context of HIV in high-income versus low-income countries. The first thing we explain is why these different guidelines exist. We host pre-natal classes and spend  time talking about various aspects of pregnancy and birth, including infant feeding. We tell women about the Canadian recommendation to formula feed from birth and unpack the issues that this may raise for each individual – and these issues really can differ between women. While some women are relieved that they don’t have to breastfeed and others are somewhat ambivalent about it, for those women who do want to breastfeed, the news that breastfeeding brings some risk of HIV transmission and that formula feeding is recommended can be very distressing. Women wonder how they are going to bond with their new baby. They worry that feeding with formula will lead to negative health outcomes for their child, based on the ‘breast is best’ information that is so prevalent.

We start by telling women about the Canadian recommendation and why it exists. We unpack the science. We take this complex basic and clinical knowledge and make it digestible and understandable, and explain why there is a risk. We can’t tell women that it is “probably OK” to breastfeed – we just don’t have the evidence for this. If and when we get results from research that supports U=U for breastfeeding, we will embrace this information wholeheartedly – but until then, we support women to understand the risks of transmission and how this impacts their unique context. Importantly, we have to approach this topic in an open, understanding and sensitive manner. We need to take the time for women to unpack their specific concerns and issues around infant feeding.

The concern of healthcare providers is that women will breastfeed in secret. Healthcare providers and others providing support need to create environments in which women living with HIV who are considering starting a family, are pregnant or are already parents feel that they can talk about all the issues that affect them.

Bottom line in our experience is that women want to do what is best for their baby(ies). Even when women are facing challenging situations in their own lives, even when they are terrified of inadvertently disclosing their HIV status by formula feeding, even when they feel strongly that they can and should breastfeed – all of these women are doing what they feel is in the best interest of their new child(ren).

What are some of the biggest challenges faced by new HIV-positive parents and infant feeding? What strategies have you witnessed or supported that HIV-positive parents employ to overcome these challenges?

There are multiple challenges that women face in implementing formula feeding, many related to stigma. Many women are concerned about HIV disclosure. The fear is that just by formula feeding, their HIV status could be disclosed. Family and community members and even strangers may ask with judgment “why are you bottle feeding??!” Women may make up a small lie to get around these discussions, which can be uncomfortable for these mothers. But the risks associated with disclosure may be significant, so they figure out a story to tell.

Also, breastfeeding can be really important to women. There can be a significant cultural component to breastfeeding across many cultures. Breastfeeding is an important mechanism to bond with a child. Some women question what kind of woman or mother they are if they are not breastfeeding. These issues and concerns take a lot of time and discussion to address. Many of the strategies that we use and the women use are outlined in a resource called Is Formula Good for My Baby? This booklet was developed  by women who had lived through these experiences as a resource for others to help address these issues. It is currently being updated to better reflect emerging issues such as U=U.

Precious Maseko

What is your experience related to pregnancy and infant feeding among HIV positive women?

I volunteered for many years in the diverse region of York, which is north of Toronto, where I worked closely with African, Caribbean and Black (ACB) pregnant HIV-positive women, and other pregnant women who are not from ACB communities. Many of these women were newcomers to Canada and dealing with a new HIV diagnosis through prenatal testing. I worked with these women through my role on the board of the AIDS Committee of York Region, often up to the point where the children were born. Luckily, these HIV-positive new parents and their babies can access services in Toronto through an organization called The Teresa Group; after the birth, we would refer the women to The Teresa Group for access to education, baby milk formula, and support services (as well as community!).

In Canada, messaging culturally and from the healthcare system around breastfeeding is very often that “breast is best.” However, since breastfeeding introduces a risk of HIV transmission that can be avoided, for HIV-positive mothers, Canada and other high-income countries currently recommend exclusive formula feeding from birth. What does this discrepancy mean for HIV-positive mothers?

First of all, when women come to a country like Canada, the first thing you hear is “choice! You have choices here!” It is like the national anthem! So, newcomers believe that they are finally in a country where there is choice: they are HIV positive and have a choice to have a baby, an HIV-negative baby. Then they come to realize that they don’t actually have choices for all aspects of having a baby. While doctors don’t dictate exactly what HIV-positive women should do around infant feeding, in reality, these women have very little “choice.” What I mean is the reality for women with HIV is that there are a series of areas that they get schooled in: transmission can happen through breastfeeding – the risk is not zero – and there is a risk of HIV criminalization in Canada in general for HIV non-disclosure. Let’s not forget that for these women criminalization can be two-fold: sexual transmission and transmission to the baby. When the pregnant woman combines these pieces of information, the result most often is the “choice” to formula feed – but you see? It isn’t really a “choice.”

This can have profound mental health implications for HIV-positive women. In ACB communities, feeding the child is a central focus, for the mother, but also for the community. Historically and currently, women almost exclusively breastfeed. Culturally it is very important. Most people wouldn’t understand why anyone would use formula! Sure, some women formula feed because they do believe that it is good for the baby. But others do it out of fear of criminalization and fear of infecting their babies. This is not the same motivation as doing it because you feel like you are doing the best thing for your child. This can be very, very hard.

What are some of the biggest challenges faced by new parents in implementing the infant feeding strategy of their choice? What strategies have you witnessed or used to overcome these challenges?

Perhaps the most immediate and pressing issue for these women is accessing formula. Formula is very expensive. Luckily, women in Ontario can often access formula for free through The Teresa Group, who will even deliver it to local pharmacies or the local ASO, making it more accessible for new parents.

A longer-term challenge is related to the discrepancy between the cultural importance of breastfeeding and the practical importance of formula feeding for HIV-positive mothers, because of the risk of transmission. As I mentioned, culturally in most ACB communities, breastfeeding has incredible value – and everyone seems to do it. People think of breast milk as the most important gift from mother to baby. Someone can have very limited resources, but she can still give this amazing gift to her baby. Women need to be given tools to support their formula feeding – to set boundaries around their choices with their family or community and to determine how to explain to their community why they are not breastfeeding – because, guaranteed, it comes up. For example, when visitors come to see the baby, they often want to see the baby feed, to see it latch and this is their way of supporting a new mom. It can be a challenge for women to address this if they have not disclosed their HIV status. Most women think up a story to tell, justifying the formula feeding, for example that they just don’t feel comfortable nursing in front of anyone.

In the face of this, not breastfeeding is very, very isolating. It is isolating in your own community, at a time when one needs support. Women avoid social gatherings at a time when they need help. Not breastfeeding can also be isolating from your baby. Women often experience a lot of guilt around not breastfeeding. When a baby is upset and crying, these women can’t just put a breast in its mouth, something they know will soothe the child.

The choice to formula feed can also be stressful for the father. This man has to watch the mother of his child experience stress and guilt over not breastfeeding. And this guilt can last for years. I know women who see their child not running fast or not doing well in school – and they question if it is their fault, that they are not developing properly because they were not breastfed as babies.

Eventually of course, HIV-positive women are accepting. Living with HIV is about accepting – accepting that you are HIV positive, accepting that you must use condoms, accepting that you need to disclose your status, and for these women, accepting that they can’t breastfeed. It all becomes very normal, but is it not a question of choice.

What are the most important things that service providers and family members can do to support HIV-positive mothers around infant feeding?

Women need to be able to speak to other HIV-positive mothers who have gone through this. This is very important. Service providers need to facilitate connections between these peers, provide space for women to speak to each other, and encourage new mothers to learn from those with lived experience. Service providers must continue to listen to new mothers, to be able to fully understand the significance of breastfeeding to these mothers. This is the only way to effectively support them. Let’s engage in a dialogue around mental health in relation to this issue.

Practically, women need access to formula before they have the baby. One of the worst things that women can experience is having a crying newborn and no formula to give. They need help to access it – both from a cost perspective and a transportation perspective. It needs to be free and delivered to the new mother in the way that she decides – whether she visits the ASO, if it is delivered to a pharmacy, or something else.

Let’s also look into some of the barriers HIV-positive mothers face to formula feeding exclusively and how we can help eradicate these barriers. Have we started developing accessible resources for HIV-positive mothers, resources that clearly explain the risks and the science associated with breastfeeding?

Lastly, when the father/partner knows the woman’s HIV status; he also needs to be supported. Pregnancy and post-natal services are largely focused on the mother; men are rarely considered. Men need services as well so they know how to support women. We must always remember that where heterosexual relationships are at play we cannot continue to leave men behind in these crucial conversations; they are indeed part of the puzzle.

Related article

For more detailed information on pregnancy and infant feeding, see Pregnancy and infant feeding: Can we say U=U about the risk of passing HIV to an infant?