It is 1995. HIV/AIDS is still adolescent, having burst into world consciousness less than 15 years ago. In upscale Zimbabwe a woman is newly diagnosed as HIV-positive and she is distraught. Her eight month old baby is refusing the bottle. He wants the breast but unknown to him, his mother’s breasts have just been deemed dangerous vessels capable of delivering to him a deadly virus. His mother has no way of knowing if she has already transmitted the virus to her son. Nor does she know how risky it will be to continue nursing him.
She turns to Pamela Morrison, an international board certified lactation consultant in the capital, Harare. But Pamela does not know the answers. Neither do the doctors at the Ministry of Health.
This was the heart churning encounter upon which Pamela Morrison began her quest to have the right answers about infant feeding for women who carry the HIV virus. Twenty years later Pamela continues the mission of counselling and guiding HIV positive mothers, though now with the guide of formal policy and the wisdom of decades of accumulated evidence standing behind her.
I caught up with Mrs. Morrison while she was working and waiting – waiting for the birth of her first grandson. She was not too busy to share with us.
Here in Trinidad and Tobago and the Caribbean, the idea of breastfeeding by HIV positive mums would come as a surprise to many as policy here tells these mums to avoid breastfeeding and use replacement milk formula instead. This contrasts with some resource-poor countries where formula feeding is not a safe option due to formula costs, lack of access to clean water and basic sanitation. In this scenario it is actually safer for a baby’s HIV positive mother to breastfeed her baby, even if she is not receiving anti-retroviral therapy (drugs that suppress the HIV virus, which we will call ART for short). We asked Pamela about this.
“The fact that in the absence of anti-retroviral therapy 85% of HIV-exposed breastfed babies do not become infected has always intrigued researchers. Certain factors in mothers’ milk serve to protect a baby from postpartum HIV transmission and in fact, over 2000 patents have been taken out on the components of human milk, many of which are being developed or genetically engineered as anti-AIDS drugs.”
Pamela lists off several protective components. You don’t have enough fingers to count them all. Breast milk is a living, active substance. Consider human milk oligosaccharides, an abundant component, concentrating on the surfaces of the infant’s gut. There it “serves as a decoy receptor to inhibit HIV binding, a prebiotic promoting the growth of desirable bacteria, and a probiotic to protect against HIV transmission.” Don’t we love it when the good guys win? Pamela tells more, “Then there is bile salt-stimulating lipase, a major human milk glycoprotein, which functions in milk lipid digestion and inhibits viral invasion, including HIV transfer to CD4 T cells. Lastly there have been recent press reports about a host protein called Tenascin-C in breastmilk which was found to neutralize HIV binding, and which helped to explain why the majority of HIV-exposed breastfed infants are protected against mucosal HIV-transmission.”
Yet HIV is sometimes transmitted by breast feeding, despite Mother Nature’s strategies for protecting infants. Without ART and supportive guidance from health care workers this occurs in roughly 15% of cases. By contrast, where optimal ART and health care are received by mother and infant, transmission risk is slashed below 1%, to almost zero. Independent of ART, exclusive breastfeeding makes a tremendous difference to the safety of breastfeeding for babies of HIV positive mothers. Countries with policies that encourage these mothers to breastfeed promote exclusive breastfeeding rather than mixed feeding since mixed feeding makes transmission so much more likely.
Pamela explains, “Exclusive breastfeeding means that the baby receives no other foods and liquids apart from prescribed medicines for the first six months of life. Premature introduction of other foods and liquids to the baby before age 6 months leads to disturbances of normal gastrointestinal flora,[ie the bacteria that are supposed to be in the gut and serve as a guard against harmful bacteria], exposure to dietary antigens, and inflammation resulting from infection with pathogens, all of which result in small sites of trauma and inflammation in the lining of the infant’s gut. When the infant’s compromised gut is exposed to HIV in breast milk the damage allows the virus to enter the bloodstream. Exclusive breastfeeding for six months not only reduces the risk of HIV transmission, it also reduces a child’s chances of acquiring other diseases.”
In Trinidad and Tobago cultural practices include cleaning a new baby’s tongue daily with honey or among Muslims, giving the newborn a taste of something sweet, like a bit of a date that has been pre-chewed. Do such habits undermine exclusive breastfeeding?
“Indeed they do, for the reasons just described and even where concern about HIV is not a factor such cultural practices increase the risk of infection. It might also be worth pointing out that honey is not recommended for babies under a year because of the risk of botulism. [a rare form of food poisoning that can lead to paralysis and death]. Pre-masticated [pre-chewed] food has also been shown to be a risk factor for HIV-transmission if the person feeding the child is HIV-infected.”
Pamela is currently based in the UK where formula feeding is the recommended policy for infants of HIV positive mothers. In the UK, as in Trinidad and Tobago, exclusive breastfeeding for the first six months is not a cultural norm. Indeed, far from it. So it does come as a surprise to know that the UK has guidelines for HIV positive mothers who want to breastfeed. The history that Pamela gives us may surprise even more: “It’s currently estimated that 72% of HIV-positive mothers in the UK were born in countries of high HIV prevalence where breastfeeding is the norm and where decisions about infant feeding and weaning are often made by extended family members, rather than by the mother herself. Formula-feeding identifies these mothers’ HIV-positive status to their communities within the UK. Furthermore conditions for safe formula-feeding may not be sustainable for HIV-positive mothers who are also asylum-seekers, or in detention centres. Those deported receive only enough formula for the flight home. [with their infants placed at sudden risk of under nutrition and life threatening infection] Consequently the British HIV Association (BHIVA) and the Children’s HIV Association (CHIVA) held a public consultation to take the views of health providers, mothers and others about whether the guidance prohibiting breastfeeding, should be changed and in 2010 it was.
“Current BHIVA/CHIVA pregnancy management guidelines include recommendations for combination antiretroviral therapy (known as cART) during pregnancy and the option of managed vaginal delivery for women with an undetectable* HIV viral load at term. Thanks to these interventions, mother-to-child HIV transmission is now very low, at 0.1%. The current BHIVA/CHIVA infant feeding guidelines, issued in November 2010 permit breastfeeding in a mother who really wishes to do this.
“The impact of these revisions has been profound. Now it is possible for HIV-positive mothers to discuss their wishes with their clinicians and make evidence-based decisions on which method of delivery and feeding would be safest for them. And then they can receive support to breastfeed as safely as possible if that’s the feeding method chosen.”
This is a welcome relief from the extraordinary scenarios that previous policy led to. “Because such a high percentage of HIV-positive mothers in the UK were born in Eastern or Southern Africa where breastfeeding has very important cultural and traditional significance, when these mothers are advised not to breastfeed it causes considerable stigma and distress. There have been reports of mothers hiding in their bedrooms, afraid to let family and neighbours see them bottle-feeding! Furthermore, in the past, when parents appeared to be refusing planned interventions such as bottle-feeding, it was recommended that children’s social services become involved.”
Devastatingly this meant making legally binding arrangements to “protect” the newborns by removing them from their mothers’ care. In the Caribbean formula feeding carries no stigma but carrying the HIV virus certainly does. In fact, this stigma is such that many HIV positive parents would choose the increased risk of other chronic diseases (diabetes, high blood pressure, breast cancer) to the low risk of HIV, if given the choice of how to feed their babies. So in our society formula feeding the baby of an HIV positive mum seems like the most sensible thing to do. Besides this, the other chronic diseases strike in later life and can be warded off by sensible lifestyle habits. What does Pamela say to this?
“In countries where formula-feeding is commonly practised, it would be fair to say that the culture accepts that bottle-feeding carries little risk to health, whereas the small risk of HIV transmission through breastfeeding tends to be exaggerated. As you point out, formula-feeding is not without risk, even in highly industrialized countries and almost every health outcome is improved for breastfed babies. For instance, a UK study published recently showed that exclusive and sustained breastfeeding could prevent 53% and 27% of hospitalizations due to diarrhoea and lower respiratory tract infections respectively.”
I have witnessed the tragic misery and suffering of infants dying of AIDs in the late 1990’s, before the Prevention of Mother To Child Transmission (PMTCT) programme was established, after which transmission to newborns was sharply reduced. The key tools of this programme were testing pregnant mothers, giving ART during pregnancy and labour and providing formula free of charge for their infants. No matter how we argue that breast is best and HIV is just a chronic disease, it’s a disease that can only be managed by expensive long term use of drugs that do have side effects. Isn’t the small increased risk introduced by exclusive breastfeeding too much risk in a nation where replacement formula has been made available and infant death due to infectious disease is the exception and not the rule?
Pamela is cool, rational as ever. “I think it’s difficult to oppose these arguments. As we discussed, in many industrialized countries, formula-feeding is seen as a perfectly acceptable lifestyle choice and there is the perception that a 1% risk of transmission of HIV through breastfeeding is 1% too high. The tragedy of the HIV and infant feeding debate is that there is neither a clear benefit to one course of action nor a clear risk to another. In fact it’s quite the opposite: it’s always been a dilemma of competing risks. The best that we can hope for is that each mother can make a decision about how to feed her baby, in consultation with her doctors, who can provide her with enough background research to make an informed choice on the least likely risk to her baby in her circumstances.”
Generally, free and informed choice is the ideal we aspire to. In matters of health and safety though, public policy sometimes dictates the course of action to be urged, sometimes even enforced. The World Alliance for Breastfeeding Action (WABA) supports current the World Health Organisation’s guidelines, urging countries to have one main policy for HIV positive mums (exclusive breastfeeding or no breastfeeding). The guidelines sway counsellors away from placing the burden of choice on mothers.
Pamela says, “The World Health Organisation (WHO), says infant feeding practices should support the greatest likelihood of infant HIV-free survival. WHO believe that national or sub-national health authorities should decide whether health services will principally counsel and support HIV-positive mothers to either breastfeed and receive antiretroviral interventions or avoid all breastfeeding. The decision should be based on the socio-economic and cultural contexts of the populations served including the main causes of maternal and child under nutrition and infant and child mortality.”
Pamela adds that a colleague of hers once suggested that this “should be further tailored to the needs of particular areas – eg in areas of Trinidad and Tobago where economic conditions are such that the population resembles the poorer nations, then child survival might well be best served by a recommendation to breastfeed. Where mothers’ living conditions are more like those enjoyed by mothers in wealthy nations then the recommendation not to breastfeed might be justified. In other words, maximizing child survival will require tailoring recommendations to each mother’s unique and individual circumstances.”
This of course sounds reasonable and logical but policy change must be guided by hard facts. An article by Anna Ramdass in the Trinidad Express of October 4th 2012 described higher than expected infant mortality statistics for Trinidad and Tobago with progress in reducing these figures lagging behind other Caribbean islands but this article reported no actual proven connections between HIV, formula feeding and death by infectious disease.
Backing away from policy discussions and returning to the sphere of personal choice, now that HIV transmission has been shown to be less than 1% when mothers with undetectable viral loads breastfeed exclusively for the first six months and wean from the breast around baby’s first year, are mothers who know this asking to breastfeed? “Yes, indeed, they are. An increasing number of mothers have become aware of the up to date research results, and seem to be putting two and two together; if – thanks to provision of current anti-retroviral therapy and knowledge about the protective effects of exclusive breastfeeding – breastfeeding in the context of HIV carries such a low risk (stated to be virtually zero) then they are keen to explore with their healthcare providers whether they can safely breastfeed, and they are asking for help to do so.”
Such interest is coming not only from the UK and the African continent but from North America, Australia and from countries as resource rich as Denmark and Germany. As a lactation consultant yourself, you continue to counsel and support clients directly. What would you say is the role of the lactation professional in supporting HIV positive mothers? 
“I think the role of the lactation professional is two-fold. Firstly, it is to provide information. I receive queries from HIV-positive mothers, or their breastfeeding counsellors from all over the world. They are all searching for enough information to protect individual HIV-exposed babies. Usually these mothers want to breastfeed, but healthcare providers citing out of date studies showing a high risk of transmission are warning against breastfeeding. I feel that my role is to share with my clients the most up to date information and research that I can find so that they can discuss this fully with their own doctors. Ideally, a decision will be reached that will keep the baby safe, that the mother is happy with, and that the clinician can support. Secondly, if the decision is made for breastfeeding, then the lactation professional can work with the mother to make sure that she “manages” her own lactation in the safest possible way. In this respect, the HIV-positive mother is no different from any other mother in that she needs information about breast and nipple care, about individual variations in her milk production from day to day, and how to be reassured that her baby is getting enough breast milk. Over 99% of mothers have the capacity to exclusively breastfeed their babies, ideally for the first six months- but in the context of HIV exclusive breastfeeding is especially important and it is vital that the mother knows how to avoid and remedy common breastfeeding problems. It is not difficult to help mothers achieve this happy outcome.”
Due to the fear of stigma I can imagine an HIV positive mother seeking the support of a breastfeeding counsellor or consultant while withholding her HIV positive status. “Yes, I’ve worked with mothers who I’m almost certain knew that they were HIV-positive but would not tell me. When a mother seeks help with breastfeeding, the lactation consultant or breastfeeding counsellor is extremely privileged to be invited to share in a very intense and special time as the mother gets to know her newborn. But when a mother is being less than frank, it could have a profound impact on her baby’s health and survival. It may not be appropriate for such a mother to be encouraged to go on providing small quantities of breast milk (effectively mixed feeding) if she finds she has trouble with exclusive breastfeeding. Yet we would certainly recommend this strategy to enhance the health of the baby when the mother does not have HIV, but if she has not disclosed her status, this would absolutely be the wrong advice. I want to give individual mothers the very best information, tailored to their circumstances, that I can. I can’t do that unless she’s absolutely open with me. It’s times like this when I would like to see HIV recognized as just one more medical condition, like say diabetes, or Crohn’s disease, rather than something shameful to be hidden.
“Ideally the disclosure about positive HIV status would come at the earliest opportunity so the breastfeeding counsellor can give the mother the information which is most relevant to her and her baby, and so that we can supply references and journal articles etc. for her to share with her doctors. We are all working for the same goal – a happy healthy mother with a happy healthy baby – and it can be a very positive experience when we all work together.”
*undetectable viral load or levels refers to extremely low levels of HIV virus in the body fluids of someone who is HIV positive. It does not mean that the person is cured and continued use of Anti-Retroviral Drugs is required to maintain these low levels.
Pamela Morrison began her career as an international board certified lactation consultant in Harare in 1990. While in Zimbabwe, Pamela also worked as a BFHI Facilitator and Assessor, as well as serving on the Zimbabwe National Multi-Sectoral Breastfeeding Committee and the national BFHI Task Force. She has also served on the World Alliance for Breastfeeding Action (WABA) Task Forces for Children’s Nutrition Rights, and for HIV and Infant Feeding, and the ILCA Ethics & Code Committee. After moving to England in 2005, she was employed until 2009 as a Consultant to WABA. She is currently the ILCA media representative on HIV and continues to do volunteer work for WABA.
This interview was first published by Fresh Start in the December 2014 issue. Here is the link to the original article:
The photograph of Mrs. Pamela Morrison does not appear in the original article. Warm thanks to Mrs. Adepeju Oyesanya, editor of Fresh Start for suggesting it and for the very generous and knowledgeable and meticulously professional Mrs. Pamela Morrison for sharing her time, experience and expertise.
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