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Tuesday, August 11, 2015

Fat vaginas and shrinking newborns in Japan





When I got pregnant I weighed 53 kilos at 170cm (118 pounds, 5’8); I gained 13 kilos or 28 pounds over my pregnancy. My daughter was born at just 2.6 kilos (5 pounds 11 ounces). By British or US criteria my gain was fine, and indeed I found myself wondering if I should have gained a bit more, judging by my baby’s rather modest size. Yet by Japanese standards I had gained an excessive amount. Welcome to the insane world of the incredible shrinking Japanese pregnancy.

Official guidelines in Japan recommend that women gain 7-12 kilos if they are normal weight, and 9-12 kilos if they are underweight—significantly lower than the guidelines of the UK and US. However, these figures mask the reality that is going on in clinics and hospitals where doctors routinely pressure women to gain even less than the official limits. “My doctor told me I should stop eating all fruit and carbohydrates,” complains one mum (whose weight gain was picture perfect according to the US guidelines). “I was scolded by the nurses every time I went in; they said I wouldn’t be able to push the baby out,” says another. Others reveal stories of doctors telling them they should be losing rather than gaining weight during pregnancy, or informing them that they would get a “fat vagina” unless they drastically restricted their calorie intake. No, I don’t know what a fat vagina looks like either.

What are the trends in newborn weight?
Perhaps part of the anxiety about gaining too much weight comes from the widespread misconception in Japan that average the average newborn is getting heavier. In fact, birthweights did rise through the 1960s and 1970s in Japan, but from about 1980 the trend went into reverse, with birth weights falling by 125g in the past 25 years. It seems that previous decades' anxieties about “babies getting too big” may have lingered on into the present, distorting doctors’ and the public’s perceptions.

To a certain extent it is understandable that Japanese medical authorities became worried by fact that babies and mothers were growing a bit heavier during the 1960s and 1970s. If a woman genuinely does gain too much during pregnancy, it does indeed increase the risk of difficult births, and this may be particularly true for Asian women. Asian women who gain too much are significantly more likely to develop gestational diabetes than other ethnicities. Big babies may be more likely to wreak havoc on an Asian mother’s body, as there is also some evidence that women of Asian ethnicity are more likely to sustain serious perineal tears in childbirth. Nobody is quite sure why—perhaps it is because Asian babies are proportionally larger compared to their relatively small mothers. In most developed/middle income Asian countries, this problem is increasingly being circumvented through very high cesarean rates (40-50% in countries like China and Vietnam). But the Japanese remain emotionally and culturally committed to the idea of natural childbirth; not surprisingly, a “Keep ’em small at all costs” mentality has tended to develop. 

I suppose there is a sort of “sunk-cost fallacy” in such matters—if you have spent the last decade or two telling women to severely restrict their weight, the possibility that this advice may have been harming babies may be too painful to confront. Easier to keep telling yourself that your advice is correct and always has been. It’s not like Japanese healthcare providers are exactly great at accepting questioning at the best of time.

Oh, and it’s very, very hard to get an epidural in Japan, due to a critical shortage of anesthesiologists and the cultural belief that mothers are “supposed” to suffer in childbirth, and this has probably also encouraged doctors and midwives (all of whom will have watched women suffering in long, hard labors) to encourage mothers to keep their bellies and babies small. In fact, a small baby does not always equal an easy birth--I know women who’ve torn badly pushing out five-pounders--but when you are staring down the barrel of a completely unmedicated labor with absolutely no way out of it, you are naturally going to clutch at whatever straws are available to you which might, maybe, just make things a bit easier. Add in standards of beauty which demand insect-like thinness in women even before pregnancy, and you have a perfect storm for extreme weight restriction in pregnant women. 

The consequences
Slowly, however, awareness is growing in Japan about the risks of too little weight gain in pregnancy. Japanese midwives are still heard to express enthusiasm about the idea of keeping fetuses small and then feeding them up after delivery, but as the doctor quoted in the Bloomberg article puts it, “Being born small and growing big is the worst possible scenario for risk of disease." Babies undernourished in the womb and born small may be at elevated risk of problems such as obesity and hypertension later in life,  possibly because such undernourishment sends out signals that cause the fetus's body to prepare for famine conditions in the outside world (an extreme form of this was seen in the babies born after the Dutch Hunger Winter of 1944-45, who have proven to be more prone to problems such as cardiovascular disease as adults).  

A need for balance
It’s not that we need a complete free-for-all either. Most women I know who gave birth in the UK report that they were never weighed or given any advice on weight gain, a fact which is almost certainly connected with the fact that the percentage of deliveries assisted by forceps has doubled over the last 10 years as mothers start their pregnancies heavier, gain more and have bigger babies. It’s completely reasonable for healthcare providers to be honest with patients about the fact that excessive weight gain increases the risk of difficult births, not to mention the fact that (in my own experience) women who gain huge amounts are more likely to feel uncomfortable during pregnancy and have an difficult psychological transition to motherhood afterwards. 

Nevertheless, there is mounting evidence that excessively strict weight guidelines in Japan are putting the health of babies at risk, and making pregnancy--which is supposed to be one of the happiest times in a mother's life--into a period of unnecessary anxiety, guilt and embarrassment for women. While a certain amount of caution regarding weight gain is probably advisable for Japanese women in particular, given ethnic factors relating to gestational diabetes and the problem of perineal trauma, the advice to restrict weight in pregnancy seems to have become unnecessarily extreme and to have taken on a life of its own. For mothers' and babies' sake, it's time for Japanese healthcare providers to swallow their pride and review their policies on gestational weight gain.


Further reading:






Sunday, June 21, 2015

Is there a need for more nuance in the vaccine "debate"?


Alice Dreger--an academic whose gutsiness in taking up controversial issues I have a lot of respect for--has recently written an article on yet another hot-button topic: A heretic in
the academy: What if not all parents who question vaccines are foolish and anti-science? on the book Vaccine, by Mark Largent.

Prof. Largent is basically in favor of vaccination and wants to increase coverage; however, he also criticizes some of the doctors, journalists and bloggers who have pushed the pro-vaccine line. Largent suggests that some of these people have made things more difficult by adopting all-or-nothing arguments about vaccination, as though refusing the chickenpox vaccine were the same as refusing the polio vax. He points out (correctly) that the US vaccination schedule is not based exclusively on medical evidence but is also influenced by commercial interests. He suggests a distinction between hard-core anti-vaccinators versus parents who are merely a bit anxious or who reject one or two vaccines, stating we might have more luck if we showed empathy with their worries. Dreger, describing Largent's ideas, also adds some personal stories about the gut-level fear she felt about the number of needles coming towards her child, in spite of her own strong conviction that vaccination is safe and necessary.

By using terms like "zealots" to describe some of the pro-vax people, Largent and Dreger aren't certainly out to win any friends, and both have already attracted some fierce criticism among science-based-medicine blogs on the grounds that they are going soft/pandering to parents who believe stupid things about vaccines. I do know what they mean, sort of. I personally was never one of those parents who felt gut-level "anxiety" about needles being stuck in my child, so Dreger's description of her own fears didn't resonate with me at all. The number of vaccines which are given to children in the United States certainly does sound like a lot at first glance... then again, I live in Japan with its relatively "light" vaccine schedule (Japan tends to be incredibly conservative about new vaccines and tends to panic and ban any shot that is even rumored to have created an adverse reaction); this has not been a roaring success. Japan has long been known as an "exporter" of measles due to frequent outbreaks--and as someone with no hearing in one ear due to mumps I was horrified to learn that the mumps vax is still not standard here, and that mumps regularly makes the rounds in Japanese universities.

And yet
That said, when the writer uses the phrase "vaccine zealot," honestly, I do know what she is talking about. Examples:

1) A mother posts online asking for advice about the chickenpox which her child has contracted. When it transpires that the mother had not vaccinated her child against this virus, a horde of posters descend on her and subject her to a lot of incredibly harsh, personal criticism faintly tinged with hysteria. After a while, another poster points out that there is a bit of controversy over the population-level effects of the chickenpox vaccine, which is why the British National Health Service (NHS) does not routinely offer it. The pro CP-vaccine posters, instead of admitting that the issue is somewhat nuanced, merely buzz even more angrily, all but accusing the original poster of wanting to murder immune-compromised children. 
2) A mum on a Facebook group announces that there have been a few cases of whooping cough in her state--the other side of her state from where she is living--and that she intends to avoid all unnecessary movement outside her home and stay indoors with her baby (not immune-compromised) for the immediate future. She receives responses of the "We are all praying for you!" type, as though the kid were already on its deathbed.
3) In an argument about the measles, mumps and rubella (MMR) vaccine, a poster correctly states that measles can potentially kill and cause serious complications--but cites statistics taken from developing countries, suggesting that a measles epidemic in the United States would kill up to 10% of those infected. The other posters on the discussion mostly know that this is bullshit but don't dare point this out, because this would risk giving ammunition to all the anti-vax posters who are on the same thread. (This article goes one further, claiming that more than half (!) of those infected with measles last year died of it, which if true would make measles deadlier than smallpox...!)

Okay, 1): Although the chickenpox vax is safe and effective, there's genuine concern that widespread vaccination of children against CP could be a factor behind recent increases in painful shingles among the elderly/immune-compromised in some countries (see here). Whether these things are really connected is very debatable; I personally decided to do the CP vax after weighing up the pros and cons. But "weighing up" is the key phrase here: I mean, I wouldn't spit venom at anyone who decided not to. If I had been some vaccine-hesitant parent reading through that thread, the overwhelming impression that I would have come away with would have been: "Vaccine-promoters are kinda selective with the truth and may cover up things which might call their case into question. Oh, and they also appear to be excitable and a little nuts."

Regarding 2): It's sensible and wise for parents to keep an eye on disease outbreaks in one's locality. On the other hand: if some lady announced that she was going to barricade herself in her home due to fear of child-abduction-by-strangers, I suspect that most of us would tell her ever-so-gently to "get a grip," and the risk of whooping cough multiplied by the disease's mortality rate has got to be similar. Worry about very small risks has to be balanced against the benefits of fresh air and having children spend time with friends and family.

3): Measles kills and blinds on an alarming scale in kids with Vitamin A deficiency and a heavy disease burden (chronic parasite infestations etc.). In developed countries, measles kills at a rate of perhaps 1 per several thousand cases. I know most pro-vax blogger etc. absolutely hate the "Brady Bunch" comparison, but honestly, there is some truth to the fact that by the 1960s and 1970s serious complications were rare enough that parents often didn't take measles all that seriously (hence it took quite a long time for the measles vax to catch on).

The reason why we should inoculate against measles is not because an outbreak would cause overflowing graveyards--it wouldn't. It's because nowadays we have very high standards for children's safety, so even a 1 in several thousand risk is worth eliminating, especially considering how incredibly safe this vax is. We wouldn't copy 1960s parents when it comes to car seat usage, either. And 1960s parents didn't know that measles may be connected to later illnesses in children due to "wiping clean" the body's immunity record (see below). Then you've got the issue of immune-compromised kids. There is no need for exaggerated figures when it comes to measles--the factual reality of the disease is already quietly worrying enough.


To be an activist, first be a "factivist"
As someone with a disability caused by a VPD, I feel a certain sense of urgency about the need to increase vaccination rates. If we want to do this, we need to make sure we're actually changing people's minds, not just grandstanding.

I don't know exactly what Largent says, as I haven't read his book. If he is descending into the nonsense of "let's present both sides of the argument" then he's talking out of his backside, because there is basically only one sensible argument here. But if he's talking about the need for sticking to the facts and maintaining a courteous tone in debate, then 
I'm with him.

As Andrew Maynard of the above linked blog post says "
[T]o use data that not only feel wrong, but are not backed up with evidence, only serves to undermines trust in public health experts. Anti-vaccine proponents are smart enough to realize this. Each time the data on infectious diseases and risk are spun beyond their legitimate bounds, anti-vaccine proponents are given a helping hand in winning the hearts and minds of concerned parents." When pro-vax people start to overreach--even by a little--it undermines the credibility of everything we say ever after.

"Courtesy" is important too--not frosty politeness through gritted teeth, but genuinely empathizing with people's worries. And for the love of God, please stop the aggressive dogpiling of people on discussion threads (I'm sure I've been guilty of participating in these in the past, too). Most people who hesitate about vaccination are not hardened anti-vax types, but worried parents who don't know who to trust. If we can talk to them as if we genuinely care about them and their kids, we might be surprised at how willing they are to listen.

Further reading:

A heretic in the academy: What if not all parents who question vaccines are foolish and anti-science? (Alice Dreger)  (Dreger's book, Galileo's Middle Finger, is worth a read too.)
Vaccine (Mark Largent): The subject of this post, but I haven't read this one yet, myself.
In which pro-vaccine advocates are inappropriately portrayed as frenzied, self-righteous “zealots” (Respectful Insolence): The counter-argument
Long-term measles-induced immunomodulation increases overall childhood infectious disease mortality (Science)
What is the risk of dying if you catch measles? (2020 Science)
Shingles & Chickenpox: What's the Link? Simple discussion
Why is measles still endemic in Japan? (The Lancet)



Thursday, May 7, 2015

What to expect when you wean your child at the age of 4.2 years


When I had my baby, I didn't quite expect that I'd be breastfeeding her for longer than 12 months. If you'd suggested to me that the duration of our nursing "relationship" might be reckoned in years rather than months, I'd have laughed and told you to stop talking nonsense.

And yet it wasn't until a few months ago that I nursed my child for the last time. She was just past her 4th birthday--actually, not so far from the famous "4.2 years" which is sometimes bandied about as the global average for the duration of breastfeeding (not true, as I pointed out in another post). Well, it may not be the global average, but it was the average for my children--or child, rather, since I have just the one child and there probably won't be any more of them.

I carried on nursing for this long mostly because I was simply taking the path of least resistance--I didn't mind nursing her and had no particular reason to stop. I stopped nursing her for pretty much the  same reason. She had been losing interest for the last year or so, and I have other ways to relate to my child. She's old enough to do fun things with, now--we can chuck a ball around, we draw together and sound out simple words, she is developing a keen interest in baking and crafts, especially trying to "make" dresses for her dolls out of tissues and play-dough. I can see she will be into knitting and needlework in a few years' time.

After I had realized that she had basically stopped nursing, I was happy enough but felt slightly bothered, somehow, that I couldn't remember when the "last time" was. So when (a couple of weeks later, shortly after her 4th birthday) she asked to nurse again, I agreed and let her, simply because I wanted that sense of closure. I said to her "This is the last time, though, because you're a big girl now." She said "Yes, Mummy," very calmly and demurely. And we nursed that one last time. And that was it.

That was now several weeks ago. No weird hormonal changes or breast oddities so far. In fact, not-nursing-a-preschooler is pretty much exactly the same as nursing-a-preschooler (it had been so sporadic for that last year, after all). I haven't even stopped producing milk. I can still squeeze a drop or two out, even now--a couple of months later. Sometimes I wonder if that will ever go away.

And I'm still interested in infant feeding politics, and I can't see that changing any time in the future either. That interest has to compete with other sources of interest these days, of course--education-related stuff is the new obsession, and my interest in politics has picked up a lot as well in the past year. But I'll still be keeping the blog going, and in fact I'm aiming to get my act together and start posting a bit more regularly. Some time in the next couple of weeks or so, I will be putting a post together on "the real advantage of nursing a child past 12 months." Watch this space.




Thursday, February 5, 2015

Pumping cultures, nursing cultures: Japan, Britain and the United States



I am a British blogger, who lives in Japan... and I follow a lot of motherhood-related stuff in the States, because a lot of my favorite blogs and parenting groups/forums are US-based. There are lots of differences in breastfeeding culture between the three countries that one could potentially talk about--differences in attitudes to supplementation, newborn procedures, cultural oddities like beliefs about alcohol and diet while nursing--but one aspect where one sees big differences is attitudes towards pumping and bottlefeeding expressed milk.

Breastfeeding advocacy has always had an ambiguous, push-me-push-me attitude towards expressing--is it a "good" thing that replaces formula in bottles, or is it a "bad" thing that competes with the act of nursing directly at the breast? You might imagine that cultures which make it easy to nurse your baby directly will also be places that make it easy to pump and bottlefeed your breastmilk. In fact, that's often not the case, as we shall see. A quick disclaimer--the following discussion is mostly based on my personal experiences of these breastfeeding cultures both online and in real life, so this time I don't have a lot of data to back me up. If anyone does have any data that disproves anything here, speak up!

United States
My "main" mums' board when Baby Seal was tiny was predominantly American, and one thing that stood out was the amount of time spent talking about pumping. The United States is almost unique among developed countries in that maternity leave is still not considered standard; unless you are exiting the workforce for a bit, you will probably be back at work about six to eight weeks after giving birth. For US breastfeeders, therefore, pumping is a continual source of conversation, commiseration, competition and anxiety, and US-centric breastfeeding blogs and pages tend to spend a lot of time talking about women's pumping rights at work.

To a certain extent, the normalization of pumping and bottle-feeding EBM has bled over into the experiences of stay-at-home mothers in the US, who often sock away quite substantial amounts of milk in the freezer "just in case," or with the hope of donating it at some point. The custom of carrying bottles of expressed milk around in public for feeding the baby with also seems to be commoner in the US than elsewhere, probably because public breastfeeders are more likely to get hassled (although, like everything else American, this is very regional). Exclusive pumping seems to be commoner in America too--on British fora like Mumsnet, women who want to feed their babies this way are often advised to look on American fora and Facebook pages for advice. Perhaps widespread car ownership also tends to make exclusive pumping a bit more doable in the US than elsewhere, because you can pump in the car and because a car makes it easier to tote bottles, ice packs and heavy-duty breast pumps around with you. A few women even opt for exclusive pumping due to personal choice.

Japan
Complete contrast here. Although you won't actually see many women nursing publicly in Japan, Japanese culture seems to be far more accepting of the "nursing relationship" than the States. But while Japanese culture is fairly nursing-friendly, this does not extend to pumping. You can get breastpumps in Japan, of course, and increasing numbers of women use them. But relatively few women work outside the home when their babies are small, due to maternity leave and the fact that so many women leave the workforce for many years or permanently once they have children. Using babysitters also seems to be relatively uncommon.

As a result, the culture of pumping and bottle-feeding EBM has not become rooted in Japanese culture in the way it has in the States. Quite a lot of women do give the odd bottle, but more often than not there will be formula in the bottle--a fact facilitated by the fact that Japanese mothers seem less likely to place a strong premium on breastfeeding exclusively. It's the same story with the pumping side. If you are one of the minority of women who goes back to work early, don't expect much provision or understanding for your pumping needs if you want to pump. I mostly work from home, but was asked to take on an on-site once-a-week position when my daughter was six months old. When I nervously broached the subject of pumping, they were nice enough but said that there was nowhere in the company where I could express milk. Given that the company in question consisted of a 37-storey megablock, I found that hard to believe--but it was clear that my prospective employers were having difficulty envisaging what I was asking for, because they had never received such a request. In the end, I turned down that particular job for unrelated reasons, but it was an awkward moment.

And then there's the question of getting milk into the baby. Like many things in Japan, the process of sending EBM to daycare is based on lots of silly rules and the most unbelievable inefficiency. In theory, public daycares are supposed to accept EBM; in practice, many of them outright refuse, or put enormous pressure on parents to send formula. If they do accept EBM, the majority insist on the milk being frozen first. Some daycares further stipulate that the milk has to be frozen BUT also pumped within the last week (which means that you basically have to pump, freeze the milk, and then almost immediately dig it out of the freezer to thaw it in the fridge). Apparently, even NICUs often insist on using frozen EBM rather than fresh. I have no idea why the Japanese are so obsessed with freezing EBM--are they under the impression that the freezing process "kills germs" or something? It doesn't, of course (and thawed frozen breastmilk is actually more prone to spoilage than milk that's never been frozen, because the freezing process zaps some of the natural microbicidal compounds). Given the critical shortage of daycare spots in big cities in Japan, it's unlikely that we'll see women demanding that daycares change these ridiculous rules any time soon--most women who have got a spot are too busy feeling relieved and grateful to raise many complaints, and content themselves with writing fake dates on their bags of frozen milk.

Britain
In Britain, as in America, it would be pretty much unthinkable for a daycare to refuse to handle expressed breastmilk. On the other hand, British women, like their Japanese counterparts, tend not to work full time when their babies are young because most take maternity leave. So pumping has never made quite the inroads into British culture that it has in the States (which is perhaps why the slightly awkward word "express" seems to be the commoner verb to use), although the majority of breastfeeders do own a pump and use it now and again. On British (and Australian) discussion fora, quite a lot of breastfeeding advocates encourage women not to make any use of pumping and bottlefeeding at all, on the grounds that conveying milk this way is unnecessary, might mess up the mother's supply and/or create a preference for artificial teats in the baby, and is less healthy/optimal than direct breastfeeding. I think it would be a rare American lactivist who was so negative about pumping and bottlefeeding; so many American breastfeeders work full-time that she would risk alienating a large percentage of her target audience, and if you overemphasize the difficulties of maintaining breastfeeding through pumping and bottlefeeding to mothers who are going to WOH anyway, they might just give up and decide to use formula instead.

Pumping breastmilk to avoid breastfeeding in public is also far less common in the UK than in the US, because although breastfeeding rates in the UK are low, breastfeeding in public seems to be more acceptable than in the States. In any case, the reality is that when you are with your baby and breastfeeding him or her round the clock, it is really difficult to fit "pumping a bottle and feeding it to the baby" into the routine, and if a baby does not get a bottle regularly--several times a week, at minimum--there is a high chance that he or she will eventually reject bottles altogether (as I discovered to my cost). Consequently, it seems that a large percentage of breastfed babies in the UK will not drink from bottles, and this seems to have contributed towards a general feeling on British parenting boards that breastfed babies "can't be left" for any length of time.

Conclusion
Living in Japan, it's certainly easy for me to be irritated by aspects of the culture which are interconnected with the difficulties of expressing and bottling breastmilk. Japanese culture tends to emphasize the importance of the mother-child bond; this can be liberating in some ways (very few people here will look down on you for breastfeeding a toddler or even letting them share your bed), but it's also connected with the fact that Japan has been very slow to get women into the workplace--something which is now a big problem for Japan given its shrinking workforce and its resistance to accepting large-scale immigration. The cultural squeamishness towards breastmilk that's been separated from the mother's body and the lack of legal protection for pumping at work means that many women are not able to pump their milk or feed it to their babies if they want, which deprives them of choice; others (as outlined above) are forced to go through unnecessary and time-consuming procedures which add to their burden. While maternity leave provision is a good thing, I think we should also recognize the fact that some women want to return to work while their babies are small--and they have every right to do so and leave pumped milk if they wish. I don't think that the cultural resistance towards using babysitters does Japanese marriages any good, and I'm not a fan of seeing cranky babies being toted around to smoky restaurants late at night, as is frequently seen here in Tokyo.

On the other hand, normalization of pumping can also become a trap in its own way. There is a danger that each technological innovation can become something that merely shifts the goalposts of what mothers are expected to be able to achieve. Since breastpumps have been invented, women have increasingly been expected to combine breastfeeding and working outside the home (whereas their mother's generation, if they worked outside the home when their babies were small, just shrugged their shoulders and used formula); more efficient breastpumps have raised the bar higher, with working women increasingly expected not only to "breastfeed" but to "breastfeed exclusively without formula supplementation"; with bigger freezers, better designed storage containers and more affordable double-electric pumps, even women who are not working outside the home may increasingly feel that it is expected and normal to pump "just-in-case" stashes or donate milk. And writers like Olivia Campbell may have a point when they suggest that this technological fix (ever higher-performing breastpumps) has enabled American society to avoid confronting the issue of maternity leave, opting instead to place a double burden (working and pumping) on the shoulders of fragile postpartum mothers. Similarly, because most people in the US are aware that pumping and bottle-feeding EBM is a "thing," this can lead to more pressure on mothers to carry bottles of pumped milk around with them, and can become an excuse for negativity towards women who are trying to nurse their babies in public ("Come on, lady--they invented breastpumps for a reason!! Why don't you just pump a bottle before you leave the house??").

Considering each of the above countries in turn, I think my own country--the UK--probably represents the best overall balance for respecting women's right both to feed at the breast and to pump when they need or want to--although I do wish that there was a bit more awareness in the UK of the fact that bottles are not the only way to get breastmilk into a bottle-refusing baby. I hope that each of these countries can work towards achieving a cultural consensus that will allow women and babies to take advantage of the best aspects of both direct nursing and pumping/bottlefeeding--without either becoming something that places unnecessary burdens on women or restricts their freedom.

Further reading

Baby Food: If breast is best, why are women bottling their milk? (Jill Lepore, New Yorker)
Why I pump and why you shouldn't feel bad for me (Healthy Tipping Point)
The Unseen Consequences of Pumping Breast Milk (Olivia Campbell)

Wednesday, December 3, 2014

No-BS breastfeeding resources updated

Finally got round to sorting out the HTML issues on that page, not to mention updating some of the content, getting rid of/fixing broken links and reorganizing the categories somewhat. Will go through and put hyperlinks in at some point. Cheers.

Sunday, November 2, 2014

Bullshitometer: Women with HIV should not breastfeed their babies


Should HIV-positive mothers breastfeed their babies? Canvas a few different sources--the La Leche League (LLL), the American Association of Pediatrics (AAP) and your local mums' group--and you are apt to get several different replies. Who is right? Read on....

Full circle
The commonly-held feeling that "HIV-positive = Don't breastfeed" dates back to 1985, when the first case came to light of a baby infected with HIV from its mother's milk. In the years following, international agencies and non-governmental organizations (NGOs) around the world rolled out programs for preventing mother-to-child transmission which including advising HIV-positive women not to breastfeed while providing them with free formula milk. Given the extreme panic over what was virtually a death sentence, it seemed like mere common sense at the time.

As the years went on, however, concerns began to be heard about the effects of these policies, especially from NGOs and community leaders on the ground who were beginning to see what the rough end of formula feeding in the developing world actually looked like in practice. Reports began to come in of high mortality and morbidity rates among babies who were being bottle-fed in areas lacking clean water, refrigerators or facilities for sanitizing bottles and teats, and where erratic supplies of formula were resulting in mothers filling in the gaps with cow's milk or by over-diluting bottles.

This is what formula feeding in resource-poor environments looks like. 

Breastfeeding, as it happens, doesn't seem to be a very efficient vector of HIV--not least because it contains certain substances which reduce the risk of transmission; indeed, HIV-positive women produce certain immunoglobulins not found in the milk of HIV-negative women such as anti-HIV-IgG, -IgA and -IgM. As the data began to come in, it became clear that even in the worst-case scenarios (mothers who were taking no medications and who were mixing breastfeeding with formula and other foods), the majority of babies were still free of HIV by the time they weaned. In fact, the rate of babies who both survived and were free from HIV long-term tended to be higher for breastfed babies, because so many formula fed babies were dying of other things (1).

What's more, it was also becoming excitingly apparent that the rate of transmission could be beaten down still further by putting mothers on medications to control their viral loads (2); moreover, sticking exclusively to breastfeeding (rather than adding in formula/solids) for the full six months lowered the risk further still (3). It's not clear why mixed feeding increases risk: perhaps the other substances compromise the integrity of the intestinal mucosa, or perhaps the problem is that in developing countries, food is often premasticated (4) (resulting in tiny amounts of blood from gums mixing with the saliva and chewed food). This could also explain why a small percentage of exclusively formula fed infants also tend to wind up with HIV.

So, to bring the discussion full circle: what are the recommendations for HIV-positive women? Roughly speaking: Women in the developing world are now recommended to breastfeed exclusively for six months, and alongside solid foods until around 12 months old if possible. However, HIV-positive women in developed countries are still advised to choose formula--by the AAP (5), by BHIVA (6) and just about every medical body. Why the difference? Because in rich countries, formula feeding is basically safe/fine, and the risk of infection (while against the odds) is therefore more worrying in comparative terms. Oh, and another point which is often forgotten is that HAART medications themselves tend to get into your breastmilk; studies have indicated fairly low toxicity but also to an increased rate of anemia in infants breastfed by mothers on HAART (5). I wouldn't want my baby drinking HAART-laced milk; these are not very nice drugs at all.

Breastfeeding advocates deserve much applause for their tenaciousness in helping to bring to light the serious drawbacks of bottle-feeding in developing countries, a move that will probably save hundreds of thousands of lives. You would think that that would be enough; however, judging from the HIV-and-breastfeeding information displayed by sources such as Kellymom, LLL and Best For Babes, it appears that some lactivists cannot be content with showing the breastfeeding is the best option for HIV-positive mums in developing countries; rather, they insist on trying to make out that it is the best option for HIV-positive mums in developed countries as well. That, roughly speaking, is where the science ends and the woo starts.

Hard cases
In the UK, a large and growing proportion of HIV-positive mums consists of immigrants/asylum seekers from countries such as Zimbabwe and Somalia. They are often highly resistant to the suggestion to formula feed, because of the stigma of bottle-feeding in communities where breastfeeding is normalized, and because of concern that this could "out" their HIV-positive status. The danger is that if these women are threatened with child protection services for breastfeeding, they most likely will continue to breastfeed in secret anyway, and that secrecy will make it impossible to counsel them on risk reduction measures like avoiding combo-feeding, dealing with cracked nipples promptly and so on. They may also be more likely to avoid medical services altogether which will make it harder to vaccinate the kids and so on. For this reason, medics in many countries are now advising pragmatism--counsel mothers to bottle-feed, but if they absolutely refuse, then you support them to reduce risk as much as possible rather than threatening to call in the social workers. It is essentially a "harm reduction" measure, like needle exchange programs for drug addicts; peds are not endorsing HIV-positive breastfeeding any more than needle exchanges are endorsing the use of illegal drugs.

An even harder case is represented by asylum seekers, because if an HIV-positive woman is encouraged to formula feed only to have her asylum application fail, she'll be left up shit creek; she will be forcibly repatriated to her own country where formula feeding is not safe, while her milk will have dried up. Thankfully, this loophole has now been closed (in the UK, at least), with breastfeeding now encouraged for such women until it is clear that they have the right to stay in their new host country. These common-sense and compassionate exceptions will help to safeguard some very vulnerable mothers and babies, so it's a real shame to see that some lactivists have chosen to take advantage of these to try and create deliberate confusion, implying that doctors have now given the green light to HIV-positive breastfeeding for all women in developed countries. In fact, doctors have done nothing of the sort.

Take the World Alliance for Breastfeeding Action (WABA) paper for example (7). Under "Current infant feeding recommendations for resource-rich settings," the WABA paper says:
"Their [BHIVA and CHIVA's] current published Position Paper 48 recognises in paragraph 3 that an HIV-positive woman already receiving triple ART, with a repeated undetectable viral load at delivery may, after careful consideration, choose to exclusively breastfeed for the first six months of her baby’s life. In such a scenario, the current guidance recommends: Continuing maternal triple ART treatment and short-term infant prophylaxis. Exclusive breastfeeding for six months, Frequent follow-up, Careful monitoring of maternal adherence until week after weaning. Monthly checks on maternal viral load and infant HIV status."
This is what BHIVA actually says:
"...avoidance of breastfeeding is still the best and safest option in the UK to prevent mother-to-child transmission of HIV. BHIVA/CHIVA recognise that occasionally a woman who is on effective HAART and has a repeated undetectable HIV viral load by the time of delivery may choose, having carefully considered the aforementioned advice, to exclusively breastfeed...While not recommending this approach, BHIVA/CHIVA accept that the mother should be supported to exclusively breastfeed as safely, and for as short a period, as possible. Thus, 3. In the very rare instances where a mother in the UK who is on effective HAART with a repeatedly undetectable viral load chooses to breast feed, BHIVA/CHIVA concur with the advice from EAGA and do not regard this as grounds for automatic referral to child protection teams...Breastfeeding, except during the weaning period, should be exclusive and all breastfeeding, including the weaning period, should have been completed by the end of 6 months. The 6-month period should not be interpreted as the normal or expected duration of breastfeeding in this setting but as the absolute maximum, since exclusive breastfeeding is not recommended beyond this period under any circumstances. The factors leading to the maternal decision to exclusively breastfeed should be regularly reviewed and switching to replacement feeding is advocated as early as possible, whether this be after one day, one week or 5 months."
Bit of a difference in tone and emphasis, huh? The BHIVA and CHIVA people are very clear that breastfeeding is a less safe option, but that one might consider allowing an exception for an absolute bare minimum of time if Mum really, really wants to breastfeed. The WABA spin makes it sound as though the docs have changed their minds and are all gung-ho for HIV-positive mums to get the boobies out. For what it's worth, the WABA paper is mostly a decent document with a good run-through of why breastfeeding makes sense for HIV-positive mums in poor countries. The problem is that, like a lot of lactivist literature, it can't resist trying to take things a stage further by twisting the evidence to make it look like breastfeeding is now the recommended approach for rich-country mums too. It isn't.

Smoke and mirrors
"IBCLCs can now feel more confident than ever before in supporting HIV-positive clients who express a desire to breastfeed. With certain safe-guards, including maternal adherence to antiretroviral (ARV) regimens which are mandatory in developed countries, the risk of transmission of HIV through breastfeeding can be reduced to virtually zero" states international board certified lactation consultant (IBCLC) Pamela Morrison in New HIV and Breastfeeding Resource from the World Alliance for Breastfeeding Action (WABA) in early 2013, which discusses the WABA paper mentioned above.

Now, that WABA paper is a little coy about the exact HIV/breastfeeding transmission figures--it kind of hides them away in the middle of one of the files--but when I found the relevant figures and crunched the numbers, it works out as follows: if you do everything "right" (proper ARV regime, exclusive breastfeeding with no formula or solids), your chance of transmitting HIV by age six months is about 0.74%, or approximately 1 in every 135 babies. That is not "virtually zero." It's a decent level of risk for a mother in a Cambodian stilt village; for a mother in a developed country who can formula feed safely it is absolutely unjustifiable, considering that we're talking about an incurable viral infection which requires a lifetime on a pretty unpleasant drug regime.

Shockingly, when two HIV-positive mothers themselves ask for advice in the Comments section on Morrison's article, Morrison continues to recommend breastfeeding to them without enquiring as to whether they are living in an area where formula-feeding is feasible, and even (in one case) after the mother has herself stated that she lives in the United States. We even see her advising a mother on nursing to 12 months--not six--which significantly increases the risk of infection above that 1-in-135 figure. Morrison's spin about reducing the HIV infection risk to "virtually zero" was picked up by several lactivist blogs and pages, including Best for Babes on 9 January 2013 which repeated the statement uncritically: "Big news for lactation pros and HIV-positive mamas!"

Why you should always read the original paper
Best For Babes is apparently not alone in writing odd headlines for articles they link to. On 29 January of the same year, the Kellymom Facebook page made the following post:
"The US Academy of Pediatrics Committee on Pediatric AIDS has come out with a paper saying breastfeeding should be accepted by HIV-infected women in the US under certain conditions..." 
followed by a link to the AAP's latest guidelines on Infant Feeding and Transmission of Human Immunodeficiency Virus in the United States. Now, this is what the guidelines actually say:
"An HIV-infected woman receiving effective antiretroviral therapy with repeatedly undetectable HIV viral loads in rare circumstances may choose to breastfeed despite intensive counseling. This rare circumstance (an HIV infected mother on effective treatment and fully suppressed who chooses to breastfeed) generally does not constitute grounds for an automatic referral to Child Protective Services agencies. Although this approach is not recommended, a pediatric HIV expert should be consulted on how to minimize transmission risk, including exclusive breastfeeding... 
and the opinion of the good doctors is and remains that "in the United States, where there is access to clean water and affordable replacement feeding, the AAP continues to recommend complete avoidance of breastfeeding as the best and safest infant feeding option for HIV-infected mothers, regardless of maternal viral load and antiretroviral therapy" due to the risks from infection and from drug penetration into the mother's milk. Anyone who does not actually click on the link and comb through the article (=85% of people on Facebook) is going to come away with the impression that doctors in countries like the States have now basically given HIV-positive mothers the green light. (Kellymom is no doubt fully aware that this is what will happen, and spins articles this way for precisely this reason.)

More recently, Kellymom enthusiastically heralded the arrival of a new issue of La Leche League International (LLLI)'s online magazine with a feature on "Breastfeeding for HIV-Positive Mothers." This piece contains all the usual smoke-and-mirrors stuff common to other lactivist resources on HIV. It makes vague references about exclusive breastfeeding being protective, while being coy about the fact that EBF is only protective in comparison with mixed feeding--when compared with formula feeding, it is still more likely to pass on HIV. It cites the Courtoudis study, which is the one and only (small) study where the breastfed babies were no more likely to get HIV that the formula-fed ones, but then completely fails to cite all the other studies (such as the Mashi study (8)) which all show that formula fed babies are less likely to get HIV. It repeats the misleading spin on the AAP's and BHIVA/CHIVA's stance on HIV which I described above.

It's disappointing to see Kellymom linking to this kind of thing. Then again, what can you expect from a website whose own HIV page is such a mess? The "HIV/breastfeeding" stuff on Kellymom consists of the following (see here and here):
(1) an article on ARV regimes for women in East Africa (irrelevant to the vast majority of Kellymom's readership);
(2) an article on the increased risk of transmission with mixed feeding in Zambia (again, irrelevant) which Kellymom has, confusingly, chosen to subtitle "Prolonged Breastfeeding Protects Kids From HIV" (the article does not say this);
(3) a broken link which appears to have once led to yet another set of recommendations aimed at the developing world;
(4) the bizarre "AnotherLook at breastfeeding and HIV/AIDS" page, which contains a Mothering Magazine article by the AIDS denialist (and, for that matter, germ theory denialist) David Crowe.

I think my "favorite" bit of Crowe's article--which is a nest of pseudoscience and conspiracy theories--is the bit where he decides to raise a glass to one Christine Maggiore for her brave stance against the evil establishment: "Christine Maggiore defied the authorities and, perhaps because she was a public figure with a wide support network, was able to continue to publicly breastfeed her two children." Readers, the well-known AIDS denialist Christine Maggiore is dead. Of AIDS. So is her daughter Eliza--quite probably because she consumed her mother's infected milk. I don't know if Crowe included this reference as some sort of unpleasant joke or because he thinks that his readers don't know how to Google stuff, but I really do have to wonder why on earth Kellymom thinks that it is remotely acceptable to have links to this kind of stuff on their website.

Conclusion
The swing back towards recommending breastfeeding for most women in developing countries is a huge achievement for public health and child survival. Nevertheless, the risk of HIV transmission via breastmilk remains, as does concern about the impact of ART drugs which penetrate the milk. Breastfeeding is therefore not recommended for women in developed countries with the exception of asylum seekers of uncertain status.


Further reading:
(1) Early exclusive breastfeeding reduces the risk of postnatal HIV-1 transmission and increases HIV-free survival, Iliff et al, AIDS
(2) WHO Guidelines for PMTCT & Breastfeeding
(3) Influence of infant-feeding patterns on early mother-to-child transmission of HIV-1 in Durban, South Africa: a prospective cohort study, Coutsoudis et al, The Lancet
(4) Premastication: A Possible Missing Link? Mark J. DiNubile, Clinical Infectious Diseases
(5) Infant Feeding and Transmission of Human Immunodeficiency Virus in the United States,
COMMITTEE ON PEDIATRIC AIDS, Pediatrics
(6) Position statement on infant feeding in the UK, BHIVA/CHIVA Writing Group
(7) Understanding International Policy on HIV and Breastfeeding: a comprehensive resource, World Alliance for Breastfeeding Action (WABA)
(8) Breastfeeding plus infant zidovudine prophylaxis for 6 months vs formula feeding plus infant zidovudine for 1 month to reduce mother-to-child HIV transmission in Botswana: a randomized trial: the Mashi Study, Thior et al, JAMA



Monday, October 27, 2014

The earthquake


Even when you live in a country like Japan which experiences minor tremors on a frequent basis, the sensation of a big quake--like the one that rocked Japan on 11 March 2011--is something you are never really prepared for. Feeling the ground suddenly liquidize itself under you while the walls on either side groan and rattle is fundamentally frightening in a way that is hard to put into words. Floors are not supposed to move about.

I spent the evening of 11 March alone--the phone line was down, and my husband was God knows where. It grew darker. The building still shook every now and again. I camped out on the elevator landing,  my cat in a cat carrier next to me in case we suddenly needed to make a dash for it.

Fortunately the internet connection cable was long enough to extend into the hallway, and the connection started working after a while. "Just as well the shock didn't send me into labor," I Facebooked via my laptop, attempting jocularity. "I suppose I had better make sure of my route to the hospital for next Thursday, when my cesarean's booked..." I was exactly 38 weeks pregnant at this time.

At 5:15 on the following morning, I woke up and realized my waters had broken.

Thankfully, there was one train line operating. We crowded in for the 45-minute journey to Hiro, then walked the rest of the way. You couldn't get a taxi for love nor money, of course. I don't remember much about the operation except that they were in a bit of a hurry--the cord suddenly started slipping out and I ended up head down on the table with a mask over my face. "Take deep breaths for the baby." Then suddenly, she was out. I saw her, just for a second, shortly before another aftershock sent the room rattling around us.

Everybody's looking for the sun... 
People strain their eyes to see...
But I see you and you see me
And ain't that wonder? 

*********

The next few days were the strangest time of my life. Because I couldn't walk very far, I stayed in my room--a private room, very quiet and peaceful. My husband stayed the first day, but then had to pile into the office to cover the shifts of his colleagues who were unable to get into Tokyo. Thank God for my mother-in-law, and for the kind, kind nurses, who seemed to float around the hospital surrounded by glowing halos of peace and serenity. They always spoke so softly and evenly, as if their very voices had undergone intensive carework training. And they never stopped smiling, even when I was calling them out in a panic in the middle of the night about the baby, about my latch, about my stitches, about everything.

Well, not quite everything. There was, of course, the word that I was starting to hear echoing around the TV news reports, Facebook, newspaper articles, like an ominous drumbeat in the back of my consciousness. "Fukushima." It was the word I would not say--not to the nurses, not to my mother-in-law. Saying the word out loud would have made it real--dragging the whole ugly mess right into the middle of the softly-sunshiny hospital room.

*

Nighttime. Best to get to bed early--that's what they always say.

The phone rings: "You're still in Tokyo? Oh, okay. You have heard about how you're supposed to keep the windows shut? Okay, just thought I'd let you know. Me? No, I'm in Singapore. Rajiv put me straight on a plane... Oh no, Em, I'm sure you'll be fine! How's the baby?"

Head down again. Need to sleep. Mother-in-law silhouetted in the doorway, rocking and rocking the baby.

Jolted out of sleep a few hours later by another phone call. "It's Marie here." Ah--my "highly strung" friend. "I'm sorry, I know it's the middle of the night. But I need to talk... No, I'm in Osaka now. Em, I keep having this thing where my heart starts beating like crazy and suddenly I can't breathe? Like something tight round my chest... and I keep thinking that the room is shaking even when it isn't? I've been wondering--d'you think I could be having a nervous breakdown? Is this what it feels like?"

I manage a few more hours of sleep.

Text message, early hours of the morning: "I saw the news last night, and I just thought, you want me to put some formula in the post for you? Dunno when it will arrive. Would be no bother. Let me know. Take care love. Chin up."

Text message from yet another friend saying she's probably going to leave Japan for good. "I just feel like it's time. I think a lot of people will be leaving, actually."

*

By the end of the second day, I'd worked out a sort of system for not losing my mind. There was a discussion thread on my favorite website, Ravelry, that had some actual nuclear engineers chipping in and offering some useful links, including the Atomic Insights website written by a nuclear industry insider; I kept these carefully bookmarked on my phone, along with some PG Wodehouse audiobook stories. Whenever I could feel the panic bubbling up inside me, I would click on the Ravelry discussion and the Atomic website and gulp their words down, like a big cold glass of water when you are dying of thirst--"This is not Chernobyl. Fukushima is not having a meltdown. Most radioactivity in the environment comes from natural sources..." Blah, blah. Good, good. I need to hear that. Deep breathing. Then I would do PG Wodehouse for an hour or so--just lose myself in the plot and pretend I am a long, long way away from here (Some women comfort-eat when they are stressed. I comfort-read). I discovered, through trial and error, that if I put this series of procedures into practice as soon as the panic started to surge, I could buy myself a few hours of calm before the next attack.

Baby Seal is asleep now, long eyelashes fanning her soft cheeks. She looks peaceful. Sometimes I wonder if I am poisoning her with every mouthful she sucks from me.

*

I learned fairly quickly that you should stay away from Facebook at all costs. By Day 3 it was a frenzied rumormill--people drinking iodine, saying the Big One was about to hit Tokyo and collapse everything like a house of cards... that the government is lying, and the media is stitched up, and anyone not getting out of the city nownownow is going to find themselves stuck in a hideous, Katrina-like crush, right at the end of everything, like rats in a trap, no way out--

Friends sent me goodwill messages and asked about the baby. Most couldn't visit, of course. I sent chirpily upbeat replies. It's important to act normal.

You can turn on the TV, of course--I had one in my room--but I wouldn't if I were you. Water bursting through the streets, cars swirling around like Tonka Trucks in a filthy black whirlpool.... Change channels, quickly. Japan's national TV station seems to have suspended a lot of its normal TV schedule and started showing a sort of "relaxing filler programming" instead--easy-listening Japanese folksongs played against meaningless backdrops of peaceful mountain scenery and fields of rippling golden wheat, that kind of thing. The sort of thing that the North Korean government probably shows to pacify its citizens right before they test-drive a few nuclear missiles.

*

Sitting on the bed next to my baby, heart pounding, staring at the striped cotton bedspread, scratching at it with my nails. My God, my God, what are you doing here? Only an idiot would stay when you know that everyone is going to die. My God, you had a baby, and you can't even manage the basic step of keeping your baby safe, you cannot even get that right, you useless. fucking. waste. of. space--

*

I think it was around the morning of Day 4 that I basically lost it. Sometimes, when you are speaking your non-native language all day, you reach a point where trying to explain yourself gets too exhausting, and when a kind nurse touches your hand and asks you how you are doing, you just sit there and cry. So that's what I did.

"It's okay. We've been watching you, we know that you're stressed. Muri ni shinakute ii desu yo [don't push yourself to the limit]. Why don't we just take her to the nursery for a while--maybe tonight as well? It's fine, everyone does it."

And I cried even more, not because I actually needed the baby to go to the nursery and not because the nurse's words would do anything about the earthquake, the swirling bodies, Fukushima--but because I was hurting with thankfulness that these people, whom I had never met before, were watching over me. That they cared about what was going on inside my head.

*********

Many women experience an earthquake of some kind when they become mothers. For some women it might be an actual earthquake; for others it's an agonizing labor that lasts for days, or a horrific birth injury, or a baby that screams and screams and screams and will not stop. What helps us through these times is the kindness of others--sometimes people we know, sometimes virtual strangers. I could not have got through those first few days without the endless kindness of my blessed, saintly mother-in-law--and the nurses who looked at me and saw past the foreign face, the language barrier, and saw someone who was having a hard time. They showed me that they cared about me--not just my baby, but me.

Whatever policies hospitals choose to put in place for new mothers, I hope that they never lose sight of one thing: that a woman who has just given birth is a person, not a childcare-providing machine or a pair of lactating tits on a stick. Because no matter how long a woman lives, she will never, ever forget how she was treated by those around her when she first became a mother, and whether they let her know that her feelings mattered as well.



Names have been changed in this post.