A couples therapy session for Science and fed-up parents

You know how I’m always harping on and on about how we could be doing studies that actually help us protect infant health, rather than guilt-tripping mothers? My fairy godmother must’ve been listening, because today I stumbled upon an interesting article, courtesy of Mammals Suck (maybe she is a fairy godmother? Scientists can be fairy godmothers, can’t they?)

Featured on Nature.com, the article described two findings about the sugars in breastmilk. The first discovery was that one of the human milk oligosaccharides (HMOs) – the sugar molecules present in breastmilk –  can actually increase the chance of mother-to-child HIV transmission.

The molecule, called 3′-sialyllactose (3′-SL), is found in varying concentrations in the milk of different women. In a study in Zambia, HIV-negative newborns breastfed by HIV-positive mothers are twice as likely to catch the virus during their first month of life if the mother’s milk has an above-average level of 3′-SL1.

Doesn’t sound like the most positive news, but wait: only certain women’s milk contains significant enough levels of the sugar to place their babies in danger. Plus, other sugars have a positive effect:

The same study in Zambia found that five more of the 150-odd complex sugars in breast milk seem to have a protective effect. HIV-negative infants who consumed these sugars had a better chance of reaching their second birthday than did HIV-negative babies who drank breast milk lacking those sugars irrespective of their mothers’ HIV status. (Once a baby had caught HIV, however, breast-milk sugars had no influence on survival.)

 

The second part of the article described research into why some babies are not able to fight off necrotizing enterocolitis (NEC), despite being fed human milk. Breastmilk contains oligosaccharides that fight off this deadly infection – but as it turns out, not all women produce these sugars:

 (A team) reported an association between a dangerous gut disease in babies called necrotizing enterocolitis (NEC) and the inability of affected infants to secrete a suite of oligosaccharides in their mucus. These babies are considered particularly likely to benefit from drinking the sugars via breast milk, but about 10% of European women cannot make them in their milk…

 

Okay, so this is where it gets really interesting. Both of these examples suggest that depending on the composition of a particular woman’s milk, the health benefits of breastfeeding may not be identical across populations. A researcher quoted in the article hypothesized that “(t)he often confusing literature on breast feeding’s impact on disease will be largely explained by this underestimation (of the variation in human milk).” The article also explains how “(s)everal labs are trying to identify how variation in the prevalence of the large sugar molecules in breast milk… influences infant health. Once clear links are established, clinical trials to test HMOs as health-boosting additives in infant formula milk can be drawn up.”

Say WHAAAAAAAAT??

Yep, you read it correctly, FFFs. And I think we can all take a moment for a collective sigh of relief. Not all researchers are so entrenched in their  public policy advocacy efforts that they forget to see the forest for the trees! Not all lactation scientists are lactation consultants! Some are – dare I say it – scientists.

I fear that this is the type of research that gets pushed under the rug, because it requires critical thinking. There isn’t an easy soundbite that can appeal to the masses – in the first example, the answer is not to tell HIV+ women in developing countries to use formula until they are tested for the specific HMO, because formula feeding in resource-poor countries with contaminated water is a high-risk activity. But perhaps more research could lead to some sort of treatment which would help these women lower their levels of 3′-SL and increase the beneficial HMOs.

Similarly, what if a preemie’s mom wanted to get her breastmilk tested to see if it contained the necessary HMOs to protect her baby? And if she found that she was part of the 10% who didn’t produce these beneficial sugars, perhaps that could allow her to make an informed decision about using donor milk, while either pumping to keep up her own supply, or deciding to switch to formula once the baby was older.

Research like this allows for progress. It allows us to understand exactly what it is about breastmilk that makes it so beneficial, which might lead to better, more biologically “equivalent” options for women who can’t or choose not to breastfeed. But even taking it away from the infant feeding choice powderkeg for a minute, I think it’s an interesting thing to ponder why certain people are so uncomfortable with the suggestion that not all breastmilk is perfect milk. I mean, I understand it – who the hell is science to tell a woman that her milk isn’t “good enough”?

But people – this is exactly why we can’t be wishy-washy about whether breastfeeding is a personal act or a monitored, medicalized event. If we are going to pitch it to women based on statistics, telling parents that science has proven the medical necessity of nursing our young, then we must accept the risk that science could turn around and say “erm, you know what? I messed up. That’s only true for some women. Some gals just produce inferior milk.” While we might want to say screw you, science, and the horse you rode in on, we can’t. Because we used science in some very dirty ways when it suited our needs, and now it is hanging around like a rebound boyfriend who just doesn’t take a hint.

On the other hand, if we don’t allow medical authorities to lay down moral indictments based on the way we feed our babies, then we can easily kick science to the curb when it tries to tell us that our milk may not be all it’s cracked up to be.

Personally, I don’t think either scenario is great. As that Facebook group with the funny memes says, I f**king love science. Because I don’t think it’s true science that is messing things up for women. I think it is zealotry dressed up as science – people who are so committed to a cause that they are unable to come into research with the open, curious mind so integral to the scientific process.

So, I think as women, as mothers, it is safe for us to applaud research like this. We have to trust that knowledge can be power, as long as it is handed to us free of extrapolation. It’s not scary to hear that formula fed babies aren’t protected from NEC if donor milk is made available to preemie parents, or if we know that good old science is doing its best to create a supplement that could offer our tiniest babies protection regardless of the quality or quantity of a new (and often highly stressed, given the circumstances) mother’s pumping efforts. It’s not guilt-inducing to hear that breastfed babies have a higher IQ if we know exactly why this is – if it is an association, or something about the physical closeness during the act of nursing (which could easily be recreated by a bottle-feeding parent using a bit of imagination and less clothing) or something specific in the milk (in certain milk? Do some women increase their baby’s intelligence, and some women decrease it? Who the heck knows until we look into it?).

We can’t be scared of science, and we can’t abuse it. And scientists can’t be scared of staying neutral, and can’t abuse their power. If we can give each other this mutual respect, maybe we can turn this into a beautiful relationship. Even if it did start out as a rebound…

 

 

FFF Friday: I still feel a sense of shame…but I’m strong enough now to challenge it.”

Welcome to Fearless Formula Feeder Fridays, a weekly guest post feature that strives to build a supportive community of parents united through our common experiences, open minds, and frustration with the breast-vs-bottle bullying and bullcrap.

Please note, these stories are for the most part unedited, and do not necessarily represent the FFF’s opinions. They also are not political statements – this is an arena for people to share their thoughts and feelings, and I hope we can all give them the space to do so.

You may recognize elements of Fay’s story – she shared her experiences as part of the Baby Friendly informal poll earlier in the week. There’s a rawness here that might be painful to read, but it’s so incredibly brave of Fay to share her feelings, even when she hasn’t fully processed them. I think that for those in the thick of infant feeding hell, hearing triumphant tales from those who have risen from the ash can inspire hope; but just as importantly, the stories of those with one foot still caught in the postnatal version of Hades can offer solace, and the reassurance that they are not alone. I know that when I was going through my own struggle, reading something so powerful and brutal would have given me the gift of camaraderie, and the permission to feel whatever I was feeling. That’s an integral part of the healing process, too.

Also- I have to get political for a second here, and say that Fay’s story reiterates why posting warnings on formula cans is a damaging, ridiculous, and dangerous idea – and there’s a movement happening, right now, to make that idea a reality in Australia and New Zealand. Our friends down under at Bottle Babies are working hard to give voice to women who oppose this movement, and you can help them by taking a survey found here. As Fay says, “I was so, so scared of the formula tins – because they’re painted out to be so utterly utterly dangerous.” But what is far more dangerous is what this unfounded and ridiculous fear did to Fay’s mental health. We cannot allow this to happen to more women, over “facts” based on observational studies and rife with caveats. 

Happy Friday, fearless ones,

The FFF

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Fay’s Story

When I deal with (ok, so it’s normally more of a verbal fight if we’re honest) militant pro-breastfeeding women, it always seems that they have some kind of mental ranking of “acceptable” reasons to bottle-feed. I tend to find that quite quickly, when they hear my story, they start to backpedal and slot me into one of those reasons. That doesn’t comfort me – I don’t need the approval of women who get their own sense of validation by belittling other women to make themselves look good – but I mention it because it continues to make me raise an eyebrow, and gives me a wry sense of amusement.

Although I intended to give breastfeeding a good go – I never got into the full-blown adulation of breastmilk as some kind of wonderful force of amazement that could cure all ills. I sat with a degree of scepticism through the breastfeeding part of my ante-natal class as they proclaimed it as guaranteeing immunity from eczema and asthma (my breastfed younger brother had the worst case of childhood eczema his consultant had ever seen) and told us how we wouldn’t die from ovarian cancer if we breastfed (my grandmother, having breastfed five children, died from a tumour there the size of a watermelon). When they got out the knitted breasts and they’d used the remains of whatever wool they had to hand – and mine was blue – I couldn’t really keep a straight face… then they didn’t have sufficient baby-sized dolls to practice good positioning – so I got this tiny thing – cue the jokes about premature babies, and the oh-so-helpful comments about “well you can’t really practice positioning on something that sized as babies aren’t that small”… I shall return to that point later.

Anyway – I planned to breastfeed because, well – they’re easily portable, not something I’m likely to forget when sleep deprived and trying to organise getting ready to go out for the day (even in my most un-caffienated state ever I’ve not managed to forget my boobs yet), and I didn’t fancy the faff of making up bottles at 4am. Add in the fact that the guidance seemed to have been set to make formula feeding as utterly inconvenient as possible – and it wasn’t so much a reverence for breast being best – but breast being easiest that was pulling me in. I thought I’d have a healthy attitude to it, and be able to roll with whatever fate handed me… I was wrong.

Week 33 of my pregnancy, Easter Sunday to be exact, and I’m sat there happily tucking into an excessively large chocolate Easter egg from hubby – and I start to get cramping pains in my stomach. I dismiss it, in a “woo hoo I finally have Braxton Hicks” kind of way and continue chomping (hey – it was nice chocolate – these things MUST be done!). Then I realise these pains are coming every five minutes, dither for a bit, and we go into the hospital – assuming I’ll be checked out, monitored for a few hours and then we’ll be on our way home.

I didn’t leave that hospital for a good couple of weeks.

To cut a long epic saga short – my waters had begun to leak, I was kept in to get the steroid injections to mature the baby’s lungs and, after a very traumatic, badly handled birth on the part of the hospital which isn’t really relevant here but included such noteable highlights as me being denied pain relief for 3 1/2 hours – but offered aromatherapy – which didn’t go down very well, and me doing almost all of my dilating on two paracetamol (which I think carries me bonus “mummy points” for being well-hard)… my daughter arrived at 33 weeks gestation, as a 4lb tiny little blue thing.

We were set up to fail from the start.

No skin-to-skin, no warm fuzzy fresh baby time – I didn’t even get to see her as she was rushed past me to NNICU. When they’d finished repairing the scene of devastation that was formerly my womanly bits, I was wheeled into the neo-natal unit, still completely numb from the waist down – and they pointed at her incubator… then kicked me off the unit and up to the ward for the night. No chance of bonding, no chance of even mentally processing that this was my child.

I was dumped on a darkened maternity ward and the Government leaflet on breastfeeding slung at me. When I pointed out that, since my baby was currently in an incubator, wired up to god-knows-what, and nowhere near me, that this might NOT be the opportune moment to be giving me this leaflet – the verbal barrage started and the leaflet, accompanied by the nurse, flounced out of the room. I just lay there – not quite able to deal with everything that had gone on – and kind of wondering what exact use the breastfeeding leaflet WAS to me, that night at 1am, with my baby nowhere near me, and no one looking much interested in helping me start to see if I could express some colostrum. Surely they didn’t expect my boobs to reach down the corridor, take a lift and get through security onto the ICU?!

The night, the worst night of my entire life, passed eventually and I was wheeled down onto the NICU and allowed to hold this tiny tiny creature. Remember the comment about the tiny doll at ante-natal… where it was dismissed as “babies don’t come in that size”… well mine apparently did. No one had prepared me for how to handle something so small – let alone manouver her onto my very large at the best of time breasts. Someone on the unit took pity on me and helped me try to express some colostrum – but then I was put into the first impossible position… “We’re going to put a feeding tube down your baby’s nose, your milk hasn’t come in yet so we’re going to give her formula… which brand?” Utterly numb from it all – I just let them choose and then had the horrible experience of watching them fit what would be the first of many NG tubes. They sorted me out with a breastpump nozzle and a steriliser – did a little bit of token helping me to try to get her latched on – but it was very much a “throw breast in vague direction of baby and hope it sticks” type of help. When you’re dealing with a tiny baby, with wires everywhere and this huge long tube dangling out of her nose – everything is about a hundred times harder to handle anyway… she couldn’t latch – she’d lick at the nipple like a kitten lapping milk – but that was it.

Time passed, I pumped and my milk came in (but weak in supply) – I fed what I could pump down her nasal tube, topped up with formula, but despite trying and trying and trying – she couldn’t latch, or when she could, she couldn’t maintain the latch – she was too small, too weak, too sleepy to do so. Add in the incessant interruptions of hospital life when you’re lying there half-naked fumbling away trying to get a large breast into a tiny baby, and the fact that ALL our breastfeeding lessons had been totally ignorant of the possibility of premature babies and how different it is handling them – and we were getting nowhere.

Because of various other circumstances surrounding the birth, and the fact that I was having to live on the maternity ward from hell, with no option to leave the hospital – and my mental health was starting to suffer. Trying to get her to latch every feed with no luck, having to do all her NG tube feeds, and pumping every two hours was absolutely destroying me. The tipping point came one night when I was talking to one of the staff whom I’d got very close to (she’d had a premature baby herself) and mentioned I had no idea how long we were going to be prisoners on the ward for, and she mentioned it was going to be an additional 2-3 weeks MINIMUM for us to be allowed to leave breastfeeding. Since we STILL had no sign of any progress with her being able to latch on, I asked for a bottle to try to feed her some of the expressed milk that was going down her feed tube… and she took, and I can still remember the figure now, 12 mls of the 34 mls she was taking at that point in time – and I cried. I cried with relief that I’d seen her ACTUALLY feed, by mouth, like a normal baby. And I cried because it was the first sign I’d had of any tangible progress, and because I’d been able to hold her close and provide that for her, rather than lie her down and hold a tube up in the air after a few fumbled breastfeeding attempts each feed.

Yes, I sold her out in that I took the “easy” route. I regret deeply that her mum wasn’t strong enough to stick out trying to get her to latch but I figured at least if we went home with me expressing, I’d possibly keep my options open and be able to get her to latch on when she got nearer being full-term. The amount she took by bottle rose steadily each feed and within a few days they were talking about removing her tube and sending us home. By this point I was taking domperidone and sniffing aromatherapy oils to try to increase my supply – but I was doing it, and she was feeding, actually feeding, and they took the tube out, and she did it all on her own!

So they let us go home, and I pumped, and I pumped, and I pumped… and dad did all the feeds, cuddles and being a parent thing… and I pumped, and I pumped… and we didn’t go out because I always needed to get home and pump… and I spent hour and hour and hour cleaning and sterilising breastpump parts.

I tried to get her to latch – with no luck. I tried nipple shields – no luck. All anyone gave me in terms of advice was “more skin-to-skin”… so I added that in among the interminable pumping. By now, my breastpump motor was starting to fail, as was my supply – but I kept going. In addition to it feeling like the ONE bit of my “mummy” hopes and dreams that HADN’T gone to hell because of her prematurity – the pro-breastfeeding camp, the propaganda about formula being akin to cyanide, the fear of how on earth did I make up feeds correctly (because they don’t give you that information easily any more for fear that it makes formula feeding “normal”) kept me going.

And I hit a wall – as she hit full-term, and STILL couldn’t latch properly – my supply was gone, my pump was really almost dead and my freezer stash had run out. We bought formula, and I sobbed so hard when we fed her it. I felt as though I’d sold her out by not sticking out the hospital – but I know if I had done, the toll it was taking on my mental health was so bad I would have attempted suicide soon, and I felt as though I’d failed her so badly as a mother – that my body had failed her and she’d been born too soon, and that my willpower had failed her in that she wasn’t breastfed. And I was so, so scared of the formula tins – because they’re painted out to be so utterly utterly dangerous. I remember once wailing to my husband that “I’m feeding her POISON!!!”

But I didn’t have a choice – circumstances had made the choice for me – she HAD to be fed.

And this 4lb little girl, sleepy and jaundiced who never woke and just lay in her cot… she’s thriving. She’s a ball of funny little baby who’s doubled her weight and is about to hit appearing on the growth charts and is catching up with her full-term peers fast. She’s not hitting milestones on schedule for her actual age (which she wouldn’t be expected to) – but she IS ahead of them for her age adjusted for prematurity.

Her mum’s doing somewhat less well, has PTSD from all we went through at the hospital in the NNICU, still feels guilt over it all, but is dealing with that – but does take pleasure every day in the biggest grins from the evil genius in training (she’s got the maniacal giggle down already) that is her little girl. I still feel a sense of shame if I have to bottle feed her in public, I still feel that I need to justify how she’s fed. I feel sadness and anger at how the hospital failed us in terms of their provision for preemie babies – but I’m strong enough now to challenge it.

And it isn’t the horrific faff and hazard that they made it out to be.

It’s not 100% positive, it’s not a choice I’m fully come to terms with – but there you go – my story.

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Doesn’t matter if you’re still in the midst of your story, or ten years past it – telling it is important. If not to you, then to some random other parent on the internet. E-mail me at formulafeeders@gmail.com if you’re ready to share.

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