Disaster in the Philippines: Why overzealous breastfeeding promotion has no place in relief plans

Dear FFF,

We are based in Manila which, thankfully, was spared from the brunt of typhoon Haiyan. As you may be aware, our fellow Filipinos from the other islands of Leyte and Palawan suffered from this catastrophe. Aid has been slow in coming, and the situation is now miserable and desperate. Donations from all over the world are coming in, but the logistics of getting them to the people who need them are difficult because many of the islands are isolated and cannot be easily reached. Many have not eaten since Saturday. They also do not have clean drinking water and are living in the streets amidst rubble and dead bodies.

Which brings me to my question/issue – What is the best way to feed a baby in a crisis situation like this?

 Our Department of Health has BANNED donations of formula milk – powdered or pre-mix – because of the perils of formula and because it undermines breastfeeding.  According to the Department of Health, the best solution is to breastfeed, or if the mother is no longer breastfeeding, to give support towards re-lactation. If these are not feasible, then the next alternative is wet nursing. I do understand that this is the exact reason why formula has been deemed “dangerous – because preparation of formula in unsafe, unclean conditions (including using unclean water and bottles) can lead to diarrhea and infant mortality.  However, I also believe that the options given by the Department of Health practically require a mother to choose between death of a child by starvation and death by diarrhea.  They say re-lactation as if it was like turning on a switch. Most women who have weaned young babies likely had problems lactating in the first place. How likely is it that she would be able to re-lactate in the midst of the stress, chaos, and misery of a calamity? The Department of Health says that the solution is to provide breastfeeding support, counselling, and breastfeeding-friendly setups where breastfeeding can be encouraged.  In a situation where the most basic of necessities such as water, shelter, and medical care have not even reached the victims, it does not appear that anyone is currently equipped to provide these conditions that would foster breastfeeding in a crisis situation. Wet-nursing or donated milk is the next alternative presented. On wet-nursing, I do wonder if that is really a safe option, since it is possible to also contract disease from tainted breast milk. Again, in a calamity situation, who has the time and resources to check for infectious diseases when looking for a wet nurse?  On donated milk, I concede that this is probably the most viable option, but given the sheer number of people affected, I do not think that it is a sustainable source of nutrition for all the babies affected (given that several hundred thousand homes were affected). Babies need constant nutrition, and while donated milk may augment at the start, is it really sustainable to provide for the nutritional needs of all the victims in the coming days before they are moved to a safe and clean environment? 

And so, I think, banning pre-mix formula donations is a case of letting the principle of promoting breastfeeding defeat the principle of saving as many lives as possible.  Even the American Academy of Pediatrics concedes that pre-mixed formula is the last alternative when the other options are not feasible.  Our government, however, has taken the firm stance against formula and will refuse donations of pre-mixed formula.  Incidentally, pre-mixed is not readily available in the Philippines, but I’m sure it can be procured from other countries or even by local formula manufacturers if only it were allowed.

- S. T.

 

After receiving this email, I logged on to my computer to find several sources reiterating what the author had said. According to Gulf News,

Government and private hospitals in Manila called on nursing mothers nationwide to donate milk for babies in typhoon devastated central Philippines… Explaining the aim of the campaign, (Dr. Jessica Anne Dumalag of Manila’s Philippine General Hospital’s Human Milk Bank) said, “Milk from lactating mothers is preferred over formula milk, which is basically processed cow’s milk.”

The department of health which has been promoting breast feeding has a policy to prohibit the donation of formula milk for babies in temporary shelters, during a calamity….“Children are more exposed to allergy when they consume formula milk. We are also not sure if the water used to prepare formula milk is clean (that is why it is not recommended),” said Dumalag….Government and private hospitals including private organisations were organised to accept donations of human milk. Milk donations will be pasteurised, frozen, and kept in insulated containers before they are sent to evacuation centres in central Philippines, Dumalag said.

 

Concerns over water and sterile preparation of bottle feeds during disaster situations are valid and necessary. Several years ago, we had a lengthy debate here on FFF about this very topic; I’m well aware that if relactation or wet nursing is a possibility, it is without a doubt the safest option in natural disaster settings. Bacteria-filled water, poor sanitation, and lack of resources make formula feeding a deadly proposition; when formula feeding is seen to be “encouraged” in an at-risk population, lactation may be interrupted which can have long-term consequences (i.e., the family would then need formula on an ongoing basis, which could prove difficult if money or resources were an issue). I’m not disputing this, nor am I ignoring the fact that formula marketing in the Philippines is a hot button issue at the moment, and that breastfeeding promotion is in overdrive for reasons that I can’t fully comprehend, as a privileged Western woman.

But that’s not what this is about.

A policy that forbids powdered formula donations and encourages breastmilk donations is simply replacing one easily contaminated substance with another. Donated breastmilk – and this includes breastmilk procured by breastfeeding-related Facebook pages, speaking of privileged Western women – requires careful packaging, transport and refrigeration, not to mention screening for HIV and hepatitis B (the Philippines still has a low rate of HIV infection, but it’s rapidly increasing – TIME reports that every 3 hours a new case is now being diagnosed). There are still the same risks involved with sterilizing bottles, regardless of what’s filling them; nowhere in these news reports are people discussing the importance of cup feeding, for example – something that can significantly cut the chance of bacterial contamination.

There is, however, a substance that can be easily transported without refrigeration; that has a relatively stable and long shelf life; and which can be fed to babies in a perfectly sterile manner, at least in the short-term. That substance is ready-to-feed, pre-mixed formula, served in “nursette” bottles with pre-sterilized nipples (like these).

Granted, the cost of these supplies is rather high. But while I haven’t done the math, I’d venture to guess that the cost of procuring and safely distributing donor breastmilk would be just as prohibitive. And if people are ready and willing to donate RTF and pre-sterilized nipples, what would be the harm in allowing them to do so?

The answer is none. There would be no harm, except, perhaps, to the “cause” of breastfeeding promotion. That cause may be noble and important, but right now, it’s irrelevant. To put breastfeeding promotion ahead of feeding infants safely and in a timely manner is petty, short-sighted, and cruel. Think about it: would we discourage donations of processed, high-fat canned foods to disaster victims because of concerns over obesity, GMOs, or the environment? Or would we ensure that their immediate needs were met, and worry about preaching better health habits after the roads had been rebuilt and displaced families were settled into safe, warm homes?

The fact that Dr. Dumalog, quoted above, uses “allergies to formula” as a reason for forbidding RTF formula donations speaks to the irrationality of this policy. If a child is allergic to formula, there is also a chance s/he will react to something in a stranger’s milk. A breastfed baby may indeed react poorly to formula at first, but this is a case where the mom should receive plenty of assistance and encouragement to continue breastfeeding – not told to feed her baby via bottle with donated milk. With breastfeeding rates in the Philippines being what they are, it stands to reason that most of the babies without lactating mothers present are already formula fed – therefore they will probably do just fine with donated formula, even if it’s not the same brand. We’re talking about a little gas here, not a full-scale anaphylactic reaction.

Gulf News reports that “groups that promote breast-feeding in six hospitals and in several private clinics are part of the campaign.” A disaster situation is no place for “promotion” of anything but disaster relief. And the scariest thing about this is that the Filipino government isn’t alone in letting a hatred of formula get in the way of ration. The American Academy of Pediatrics also advocates for “screened human donor milk” before RTF (although they do, at least, acknowledge that this is an option). I have yet to see one study or agenda-free policy paper that actually looks at the viability of using donor milk as opposed to RTF formula with pre-sterilized nipples during disasters. If there is a logical reason behind these recommendations, I’d love to see it. All I can find are convoluted references to “breastfeeding being interrupted” (not an issue if we’re talking about babies who are already formula fed) and concerns about sterility and availability (absolutely valid, but just as valid in regards to donated milk, if not more so).

Governments must stop putting ideology above practicality. We are in desperate need of a neutral, informed, and rational voice to come up with better policies for infant feeding – policies that do not throw the cart before the horse, and end up running over its citizens in the process.

City of Ottawa Public Health Unit’s “Informed Consent” webpage: A case study in (un)informed consent

An anonymous FFF reader has allowed me to publish the following letter, which she sent to her local Public Health unit in Ottawa. I visited the site that caused her so much consternation, and I was equally incensed. Please click here to see what she and I are talking about:

Make an informed decision about feeding your baby

My thoughts on the Ottawa website follow this letter. I’d also encourage you to check out the letter sent by the blogger at Awaiting Juno. And, if you’re feeling inspired to do so and happen to be a citizen of Ottawa (or even if you just feel like giving them your opinion), feel free to write your own letter and send it to healthsante@ottawa.ca.

***

Dear City of Ottawa Public Health Unit,

I discovered the following webpage on Informed Consent and was utterly dismayed at what I had read.

I had my daughter seven years ago and am hoping to have another child within the next two years. When I was pregnant with her I knew I was going to breastfeed her. I felt that formula was vastly inferior. Unfortunately having breast hypoplasia (something that none of the literature of had prepared me for), made exclusive breastfeeding an impossibility. My daughter went from losing weight on my breasts alone (I did have a postpartum nurse who was very concerned about my breasts due to their shape and spacing, but I dismissed it as an unsupportive nurse, not as her giving me relevant information on my situation), to thriving on formula.

That page isn’t giving informed consent, it is scaring women into breastfeeding by bringing up scary words like “obesity”, “SIDS” and “Cancer”, without mentioning any potential  drawbacks for breastfeeding (including not being able to take certain medication and that it can be a physically and emotionally draining experience for some) and without making any positives about formula. It also doesn’t mention that formula prepared properly is a valid feeding method and choosing it doesn’t mean that a child will end up toothless, obese, diagnosed with cancer, or dead. From what I have seen about the research the main risks are a higher rate of gastrointestinal viruses and ear infections (which my daughter did get, when she was 5 and a half years old). For a woman who might be already sad that breastfeeding isn’t working out with them, such phrasing of information without perspective or actual risk amounts could contribute to postpartum depression. I should know- seeing that kind of information online (it exists all over the internet) after switching to formula was a contributing factor to my own depression.

You mention on the first page that the Baby Friendly designation includes supporting women’s feeding choices, but I do not see how that supports a formula feeding woman at all and could increase the stigma and isolation about using a product that is in fact very safe to use in our city.

I encourage you to take that “Informed Consent” page down and rework it so that it does not demonize formula. The benefits of breastfeeding in all honestly should be able to stand on its own without resorting to demonizing formula. Furthermore, I am more than willing to help with any rewording to help formula feeding moms feel more supported in their choice.

As a taxpayer, mother and a woman who felt intense guilt for 2 years for using a product that nourished my daughter where I couldn’t (I also have the perspective that she is a very healthy, active 7 year old), I urge you to reconsider your approach.

Yours truly,

A.

 ***

Before I return to my Pad See-Ew, which is currently getting cold (yet another reason to be annoyed at the city of Ottawa – they are ruining my damn dinner), I want to add a few of my own thoughts to Anonymous’s letter.

The document on the Ottawa Dept. of Health website is coercive and factually inaccurate, starting with the first sentence. They state:

Deciding how you are going to feed your baby is one of the most important decisions you will make as a parent.

What the “most important decisions” you’ll make as a parent are is entirely subjective.

Next, they state:

Making an informed decision means you have all of the information you need to help you decide what is best for your family.

Yep. Exactly. You deserve accurate, dispassionate information so that YOU can decide what is best for YOUR family. This document does the polar opposite. It confuses correlation and causation (I only see two uses of the important qualifier “may” in the lists of benefits and risks – for example, they claim that breastfeeding “helps to protect against cancer of the breast and ovary.” It would be accurate to say that breastfeeding “may help to protect…” or “has been associated with a lower risk of…”, but the way they pronounce this benefit makes it sound proven without a doubt. This is simply not true); it does not mention any of the potential downsides of breastfeeding, nor the benefits of formula feeding (even if they’d just said “the ability to feed your child when breastfeeding isn’t working or there isn’t a mom in the picture”, it would have sufficed); and most importantly, it does not leave the reader with any choice other than to breastfeed, or feel like an inadequate, terrible human being. And before someone starts misquoting Eleanor Roosevelt to me, let me stop you: yes, people CAN make you feel guilty without your consent. Or if you can’t agree with me on that, let’s forget about guilt – how about embarrassed or judged? Can people make you feel that way without your consent? And what if you’re not in any emotional place to give that consent? Like when you are a hormonal pregnant or newly postpartum parent, and it’s your city government posting a bunch of fear-inducing drivel under the headline “the benefits or breastfeeding for the baby, mother, family and the community”? How about then?

The document’s piece de resistance is this half-assed suggestion at the bottom of the page:

If you have made the informed decision to formula feed and need information on how to prepare it safely, please visit Ottawa Public Health’s Food safety page.

Ah, I see. So if you’ve made a decision to do something that causes nothing but inconvenience, pain, and suffering for you and your child (and your community- can’t forfet your community!) based on this “information”, you should just go to a different department, because we’re freaking OVER you. Notice that when the link for more information on breastfeeding follows this taxonomy:

Residents>>Public health>>Pregnancy and babies>>Healthy baby and parenting>>Feeding your baby>>Breastfeeding

There is NOTHING about formula in this “Feeding your baby” section. Instead, formula feeding monsters, er, mothers are directed to:

Residents>>Public health>>Food safety and inspections>>Baby Formula

Apparently, healthy babies and parenting only has to do with breastfeeding. Formula feeding is on par with selling hot dogs at softball games.

I don’t even know what to say, except to all the soon-to-be moms and currently formula-feeding or combo-feeding mothers in Ottawa, I am so, so sorry. Your city health department sucks donkey balls. And if I were you, I’d start the angry tweets and emails right. Freaking. NOW.

Twitter: @ottawacity

Email: healthsante@ottawa.ca

 

 

Bad medicine: Why the AAP’s new statement on breastfeeding & medication is puzzling

“The benefits of breastfeeding outweigh the risk of exposure to most therapeutic agents via human milk. Although most drugs and therapeutic agents do not pose a risk to the mother or nursing infant, careful consideration of the in- dividual risk/benefit ratio is necessary for certain agents, particularly those that are concentrated in human milk or result in exposures in the infant that may be clinically significant on the basis of relative infant dose or detect- able serum concentrations. Caution is also advised for drugs and agents with unproven benefits, with long half-lives that may lead to drug accumulation, or with known toxicity to the mother or infant. In addition, specific infants may be more vulnerable to adverse events because of immature organ function (eg, preterm infants or neonates) or underlying medical conditions.”

 

- Source: The Transfer of Drugs and Therapeutics Into Human Breast Milk: An Update on Selected Topics Hari Cheryl Sachs and COMMITTEE ON DRUGS. Pediatrics; originally published online August 26, 2013; DOI: 10.1542/peds.2013-1985

The preceding is the conclusion to a new report released by the American Academy of Pediatrics, which has given birth to a number of ecstatic headlines – “Most medications safe for breastfeeding moms”. “Medications of nursing mothers do not harm babies”. “Top Pediatrician’s Group Assures Most Drugs Safe While Breastfeeding”. Reading these, one might assume that a plethora of new research had been released, provoking the AAP to make a blanket statement about risk and benefits.

One should read the actual report before one gets too excited.

Other than the introduction and conclusion, which basically explain that studies are limited on most medications and how they affect a nursing infant, but that the benefits of breastfeeding outweigh the risks, the report reads like one giant warning.

Let’s start with antidepressants:

“Previous statements from the AAP categorized the effect of psychoactive drugs on the nursing infant as “unknown but may be of concern.” Although new data have been published since 2001, information on the long-term effects of these compounds is still limited. Most publications regarding psychoactive drugs describe the pharmacokinetics in small numbers of lactating women with short-term observational studies of their infants. In addition, interpretation of the effects on the infant from the small number of longer-term studies is confounded by prenatal treatment or exposure to multiple therapies. For these reasons, the long-term effect on the developing infant is still largely unknown…Because of the long half-life of some of these compounds and/or their metabolites, coupled with an infant’s immature hepatic and renal function, nursing infants may have measurable amounts of the drug or its metabolites in plasma and potentially in neural tissue. Infant plasma concentrations that exceed 10% of therapeutic maternal plasma concentrations have been reported for a number of selective serotonin reuptake inhibitors…”

As stated in the first sentence of this section, the evidence hasn’t really changed from when the last AAP statement on drugs and human milk was released, circa 2001. But the conclusion sure has. In 2001, the authors advised that “(n)ursing mothers should be informed that if they take one of these drugs, the infant will be exposed to it. Because these drugs affect neurotransmitter function in the developing central nervous system, it may not be possible to predict long-term neurodevelopmental effects.” In 2013, the author states “Mothers who desire to breastfeed their infant(s) while taking these agents should be counseled about the benefits of breastfeeding as well as the potential risk that the infant may be exposed to clinically significant levels and that the long-term effects of this exposure are unknown.”(p. e799)

This is where I start getting nervous. The last thing I ever want to do is discourage someone who needs antidepressants or another lifesaving medication from breastfeeding – especially considering I personally chose to take the small risk and feed my newborn breastmilk while I was on Zoloft (one of the many SSRIs that are categorized in both reports as “Psychoactive Drugs With Infant Serum Concentrations Exceeding 10% of Maternal Plasma Concentrations”, meaning that the levels of the drug getting into a newborn via breastmilk are clinically significant and of potential concern for a growing neonate). These are the risk/benefit scenarios we often discuss here on FFF – decisions that parents need to make (and deserve to make), armed with solid information and free from paternalistic admonishments that don’t have real world meaning. But I don’t feel that the new AAP statement – or the way that the media is reporting it – is allowing for a truly informed decision.

Notice the emphasis of the newer AAP statement – the advice given is to counsel the mother on the benefits of breastfeeding first, and then inform her of the potential risks and unknowns of nursing on her medication. Anyone with a grade-school understanding of psychology can figure out what that would sound like. (“Breastfeeding is extremely important and will save your child from every ill imaginable! But I should warn you that if you choose to nurse while on Zoloft, we can’t confirm or deny that your baby may turn into a werewolf when he reaches puberty. Your choice!”)

Maybe I’m arguing semantics here, but why couldn’t they avoid the paternalism of both the 2001 and the 2013 statement and simply advise doctors to inform parents of the risks and benefits of both feeding options, as well as the risks of nursing on medications, in an accessible, understandable way? And then help them mitigate the risks, no matter what path they choose?

Moving on… painkillers. The AAP is now agreeing with what I freaked out about in Bottled Up – Vicodin and newly postpartum, breastfeeding women are not a match made in heaven. And before you post-C-section mamas beg for the Darvocet, that won’t fly, either. Turns out that infants whose mothers used these commonly prescribed drugs  for managing postpartum pain have popped up with cases of unexplained apnea, bradycardia, cyanosis, sedation, and hypotonia; one infant died from a Vicodin overdose after ingesting the drug through mother’s milk. But hey- you can take (moderate) doses of Tylenol and Advil to manage that post-surgical pain, so no worries.

Are you starting to see why “Medications of nursing moms do not harm babies” might not be the most accurate headline?

Ummm…. Herbal remedies! Those have to be okay, right? They’re natural, after all!

Not so fast, sugar.

“Despite the frequent use of herbal products in breastfeeding women (up to 43% of lactating mothers in a 2004 survey), reliable information on the safety of many herbal products is lacking…The use of several herbal products may be harmful, including kava and yohimbe. For example, the FDA has issued a warning that links kava supplementation to severe liver damage. Breastfeeding mothers should not use yohimbe because of reports of associated fatalities in children…Safety data are lacking for many herbs commonly used during breastfeeding, such as chamomile,black cohosh, blue cohosh, chastetree, echina- cea, ginseng, gingko, Hypericum (St John’s wort), and valerian. Adverse events have been reported in both breastfeeding infants and mothers. For example, St John’s wort may cause colic, drowsiness, or lethargy in the breastfed infant…Prolonged use of fenugreek may require monitoring of coagulation status and serum glucose concentrations. For these reasons, these aforementioned herbal products are not recommended for use by nursing women.”

Wait. It gets worse. You know those galactagogues you were prescribed to increase your milk supply? Flush them down the toilet, says the AAP. The safety of Domperidone, for example, “has not been established.”

“The FDA issued a warning in June 2004 regarding use of domperidone in breast- feeding women because of safety concerns based on published reports of arrhythmia, cardiac arrest, and sudden death associated with intravenous therapy. Furthermore, treatment with oral domperidone is associated with QT prolongation in children and infants.”

The authors aren’t overly enthusiastic about other galactagogues, either, and instead encourage moms struggling with supply to “use non-pharmacologic measures to increase milk supply, such as ensuring proper technique, using massage therapy, increasing the frequency of milk expression, prolonging the duration of pumping, and maximizing emotional support.”

I’ve read the report 10 times now, trying to see where they could possibly come to the conclusion that this is a game changer; that it is at all newsworthy; that this is what counts as progress. To my untrained eye, it appears to be little more than a re-framing of old information to fit in better with the “breast is best at all costs” mantra, rather than a landmark “update” of an antiquated policy paper. Based on this report, how are pediatricians supposed to tell patients, in good conscience, that there is adequate evidence that it’s safe to breastfeed on “nearly all” medications?

For most of the meds in question, it probably is safe- similarly to how the risks of infant formula are scary on paper and far less daunting in real life, I honestly believe that we’d be seeing a lot of seriously messed-up kids if your absolute risk of nursing while on antidepressants was high. Just like many of us have made carefully weighed decisions to formula feed, feeling the weight of misery in one hand and balancing that with an increased risk of ear infections in the other, so shall we handle questions of breastfeeding and medications. The problem is not with moms making choices based on the facts we have- the problem is when respected, policy-creating organizations create false narratives that render us unable to make those choices in a truly informed way.

The report leans heavily on the work of Thomas Hale and LactMed, fantastic resources for research on these issues. I’m grateful there are people dedicated to focusing on this research – research that matters so much more than yet another associative study attempting to show that breastfed babies are smarter than formula fed ones. We desperately need more research on how commonly prescribed medications affect breastfeeding infants, not so that we can “forbid” women from breastfeeding, but so that we can help them reach their breastfeeding goals. This might mean timing medications so that they are mostly metabolized prior to nursing, or pumping for some feeds, or even -god forbid- using a little formula or donor milk for the feeds that have a higher amount of the drug coming through milk (these are tough things to figure out, sometimes, as people metabolize differently, as do babies, but it’s a good goal to have on the horizon). Maybe it means finding better medications. Or it might just mean allowing parents to ponder their own risk/benefit scenarios and respecting their decisions, whatever those may be.

Before we can do that, though, someone has to remind the AAP that they are doctors first, breastfeeding advocates second. Let the science speak, not the zealotry, and maybe we can start helping parents make truly “informed” choices.

 

Guest Post: On HIV, stigma, and the pressure to breastfeed

If people read one post on this blog, I hope to god it’s this one. I didn’t write it – it was submitted by Megan DePutter, who works as a Community Development Coordinator at a Canadian AIDS Service Organization – and therefore it tackles so much more than the usual mommy-war crap I tend to drone on about. 

Please read this, and talk about it, and share it as much as you can. As Megan says, as we advocate and empower women to breastfeed, we cannot simultaneously allow women who are already marginalized feel more shamed and judged. This doesn’t hold true only for women living with HIV, but those dealing with a whole slew of medical and emotional conditions that might make breastfeeding difficult or contraindicated. Sort of puts a new spin on the saying “the perfect is the enemy of the good”, doesn’t it?

- The FFF

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On HIV, Stigma, and the Pressure to Breastfeed

By Megan DePutter

I work in a small-ish community (about 130,000 people) in a town about an hour outside of Toronto, in Ontario, Canada.  Locally, provincially and nation-wide, “baby-friendly initiatives” in health care and social service institutions aim to encourage and exclusive breastfeeding for 6 months. Bypassing for now the unfortunate name of the initiative (which seems to insinuate that any other approaches to feeding are “baby un-friendly”), I understand that these initiatives are evidence-based and well-intended. The problem is that, for the women I aim to support, these initiatives can create further isolation and shame to people who are already marginalized. The women I am referring to are women living with HIV.

See, while the complexity of the HIV virus is still stumping scientists who are working towards the distant prospect of a vaccine or cure, HIV has become primarily a social and a political problem, rather than a biological one.  Canada is one of the best places in the world to be living with HIV – although it’s far from perfect. But here in Canada we have readily available treatment – treatment that is more effective and easier to manage than ever before.  HIV can still pose health risks even with treatment, and the side effects can be unpleasant to say the least, but someone who is diagnosed today with HIV, takes their medication regularly, doesn’t smoke and takes care of their health can expect  a near normal lifespan.   This means if someone living with HIV today has access to treatment, health care and other necessities of good health, such as good food and stable housing (and these are big ifs for a lot of people), they can enjoy a full and productive life. They can work, they can love, they can even have children.  That’s right – they can have children! HIV positive women can – and do – give birth to HIV negative babies. In Canada, with proper treatment, the risk of giving birth to an HIV positive baby is reduced to less than 1%! This is great news for women who are HIV positive and want to have a family. However, because HIV can be transmitted through breastmilk, it is important that they do not breastfeed.

Let me back up for a minute. HIV – which stands for Human Immunodeficiency Virus – is the virus that attacks the immune system and, left untreated, causes AIDS (Acquired Immune Deficiency Syndrome). The distinction between HIV and AIDS is important because today, with proper treatment, the virus can be successfully suppressed.  Without treatment, the immune system breaks down, leaving the individual vulnerable to life-threatening opportunistic infections, at which point an individual is said to have acquired AIDS, and without medical intervention, will likely die.  With treatment though, someone can live with HIV for decades and never develop AIDS. So, if AIDS isn’t the biggest threat to people living with HIV, what is?

The answer is unequivocally stigma.  Contrary to a lot of myths, HIV is not spread through casual contact such as sharing sheets, linens, clothing, food, dishes or cutlery, bathwater, swimming pools, or toilet seats. HIV is not spread through touching, hugging, or kissing. HIV is not spread through coughing, sneezing, urine or feces, sweat, tears or saliva.   Moreover, the effective use of condoms are a successful way of preventing HIV transmission during sex, and viral load suppression through medication further reduces the risk of transmission to a near impossibility.  Methods of getting pregnant for couples who are sero-discordant (mixed HIV status) are plentiful. In other words, there is no reason to be afraid of living with, loving, or building a future with someone who has HIV.  Yet HIV positive people continue to face rejection upon disclosure of their HIV status – from potential partners, from family members, from friends, from their church and from entire communities.  People face discrimination in accessing housing and in the workplace and even from health care workers.  Whether out of fear, lack of knowledge, or judgments around how someone may have acquired HIV (which often stems from racism, homophobia, sexism and/or stigma around sex or drug use,) social exclusion can be an everyday part of the life of someone living with HIV. It is impossible for me to overstate the impact that stigma has on the health and wellbeing of people who are positive, even at a time when people with HIV are at their healthiest.

Let’s get back to breastfeeding.  For women living with HIV, motherhood can raise a gaggle of other complex social and emotional challenges. I’ve already mentioned that stigma impacts people living with HIV, but what about women specifically? People might assume that she’s a drug user, that she’s been a prostitute, that she’s been promiscuous. Given the judgments and attitudes that are often formulated around women’s sexuality, you can imagine what a woman living with HIV might face. For mothers, this stigma is intensified. And, since women with HIV must not breastfeed (although the best-practice around this differs depending on what country you live in; the guidelines are different for women living in countries without access to clean drinking water or formula) women living with HIV often face added judgment around their inability to breastfeed.

Since most women will not want to disclose their HIV status to others, they cannot divulge the very good reason they have for not breastfeeding when facing scrutiny.  The questions they are inevitably asked by friends, family, and health practitioners cause anxieties for women who are attempting to keep their HIV status a secret. In some cases, people can be very pushy about it; I have even heard stories where family members or friends may get so involved as to physically attempt to place the baby on the breast and have the baby feed without consent.  If a woman does disclose her status, she would, unfortunately, very likely face further stigma and judgments about her HIV status.  And if word got around (which it often does), she could be virtually expelled from her community. For women who are newcomers, do not speak English fluently, or are living in poverty, community engagement is often an imperative component of physical, mental and emotional wellbeing. When it comes to keeping HIV a secret, there is a lot at stake.

Furthermore, pregnancy and motherhood can bring up feelings of guilt and shame about the illness; in addition to facing external stigma, many women experience internalized stigma, and may feel guilty for not being able breastfeed. Feeling guilty about not being able to breastfeed is problematic enough for any mother, but for women who are already marginalized, further feelings of guilt and shame add to an already pretty big burden.  Some women may be tempted to breastfeed despite the risks. Others may withdraw from social circles. Others may be reluctant to access social services or health care where they are made to feel guilty about formula-feeding or pressured to discuss their personal reasons for formula-feeding.  For women living with a disease that needs to be managed through access to treatment, good health care, food, housing and community supports, social isolation can be dangerous.

HIV is not something a lot of people think about today, but it still exists – it’s just hidden.  Unfortunately a lot of health care workers in our community are unaware of HIV, the scientific developments in prevention and treatment, and the social implications of the disease.  HIV workers aim to help support women through these challenges, but we need our communities to be aware of these issues and help create supportive environments. Just because women living with HIV do speak openly about their illness does not mean the problem has gone away.

Mothers who are living with HIV need proper information and support around formula-feeding, and they need this information offered in a non-judgmental space. When programs are designed they need to take in to consideration the multitude of needs that may be spoken or unspoken.  I believe it is important that health-promotion programs, including those that support breastfeeding, be designed in an inclusive way. Women already face extensive social and political control – particularly around our bodies, sexuality, and children. It is important that social and health care programs foster independence, support diversity, and create a safe atmosphere that is free of judgment and respects the privacy and confidentiality of all women.  This is about respecting the critical health priorities of women who may already have extensive trauma issues and already experience marginalization.  I know there has been a lot of important and empowering work done towards providing better support and education on breastfeeding that is free from the outside influences of companies who sell formula, but we need to prevent the pendulum from swinging towards exclusivity.  I hope to educate health care and social service providers in my community to share information and create spaces that are built on models of inclusivity and support, rather than stigma and shame.

Please feel free to contact me at communitydevelopment (at) aidsguelph.org for more information or if you have tips or suggestions to share on how service providers can create a supportive environment for all women!  For more information about HIV and AIDS, you can also contact your local AIDS Service Organization. Other great resources are thebody.com and CATIE.ca.

Dear Beverly Turner: You do realize the definition of misogyny, right?

Dear Beverly Turner,

I suppose you could call me the Queen Bee of the Gobby Women, or the Ringleader of the  ”Noisy loons creating ‘Brestapo’ caricatures to appease their own consciences“. I’m quite proud to wear these labels, if you’re going to insist on stooping to schoolyard name-calling, but on behalf of my gobby, looney sisters, I wanted to respond to your allegations that we are partly to blame for the recent, slight decrease in UK breastfeeding rates.

The thing is, Ms. Turner, you’re operating under the assumption that we are incorrect in our assessment of current breastfeeding rhetoric. Your experience may not have matched ours, but why is your own truth more valid or weighty than the truths of hundreds of other women – a group so adamant, in your estimation, that we can make an impact on the collective consciousness of your great nation? Do you really believe that we are all just making this stuff up? Perhaps formula feeding correlates with a vivid imagination; I have yet to see a study showing this association, and I’ve read practically every infant feeding related study to hit a peer-reviewed journal in the past 5 years. But considering how you’ve positioned yourself as a master social critic in this arena, I suppose I should bow to your expertise in this matter.

So, let’s go with your theory for a moment. Let’s say that we all are making this up, that none of us have been bullied, shamed, scared, or downright devastated by how breastfeeding is currently promoted. If society is really so bottle-friendly, and formula feeding is “cool”, why would we be inspired to create an elaborate group fantasy to assuage our feelings of inadequacy? I’d assume that if the cool kids were formula feeding, we’d be wielding our bottles of Aptamil with pride, rather than lurking behind our anonymous keyboards, haranguing innocent breastfeeders on Mumsnet.

Or maybe – bear with me for a moment – there really are women who have been thrust breast-deep into severe postnatal depression after failing to breastfeed. Perhaps women truly exist who were raped or sexually abused in childhood, for whom a NCT nurse shoving a breast in a baby’s mouth triggers horrid memories that make a new mom want to throw her babe against a wall. Suppose there are adoptive mothers for whom the constant barrage of articles and admonishments about how superior breastfeeding mothers are to formula feeding ones is like nails on a chalkboard (if the chalkboard was your heart). Consider an alternate universe where some parents really do end up starving their babies to the point of hospitalization because they were worshipping at the altar of the almighty exclusive breastfeeding edict despite a physical inability to produce sufficient milk (there may only be 2-5% of women who are physically unable to breastfeed, but with the current British birth rate around 800,000/year, we’re talking 16,000 women at minimum- nothing to sneeze at).

I won’t discuss my reality or experience here, because I’m American. And honestly, one woman’s experience is hardly important in the grand scheme. However, I can happily point you to hundreds of personal stories British women have shared with me over the years, women who reflect the groups I’ve just “made up” in the last paragraph. I suppose they could all be lying, but I think it’s just as likely that you’re extrapolating a data set of one (yourself) to your entire country, without stopping to think about the women you’re hurting in the process.

Regardless of who is right, I would like to see these masses of vocal harpies who are crushing the hopes of expectant mothers hoping to breastfeed. I am curious why they would lobby for the NHS to cut funding for breastfeeding support, considering they tried to breastfeed and couldn’t; one would think that better support would have been welcomed by these “failures”. Claiming that the current state of breastfeeding support is harmful is not synonymous with being anti-breastfeeding; quite the contrary. With the right kind of support, not only would more women be able to meet their breastfeeding goals, but those who chose not to or could not breastfeed wouldn’t feel sufficiently disenfranchised to spend hours arguing with people like you online.

Instead of trying to understand where we are coming from; instead of listening to our experiences with an open mind and accepting that just because we dislike the posters on the maternity ward walls, we still love breastfeeding moms (and many of us wish we could have been one), instead of trusting your fellow women – you threw us under the bus.

Lastly, speaking of misogyny, I assume you know that the definition of the term is a “hatred, dislike or mistrust of women”. The only person I see hurling hatred and mistrust towards a large group of women (because formula feeding mothers who rail against a systemic failure to support our efforts while simultaneously shaming us are, in fact, still women, despite their lack of lactational abilities) is you.

Sincerely,

A particularly noisy, gobby loon (and proud of it),

Suzanne Barston

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