FFF Friday: “I was woefully uneducated about other options…”

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. 

Happy Friday, everyone! This FFF Friday tale comes from Kira, who has Sjogren’s Syndrome. Interestingly, this is the same condition Kathyn, one of the women featured in my “Message in a Bottle” video series, found out she had after giving birth to her son. I’m glad that Kira is willing to share her story, since it seems like this is yet another of those health issues no one talks about in regards to lactation troubles.

***

I knew even before my first daughter was born that I might not be able to breastfeed.  The evidence is (as far as I can tell) mostly anecdotal, but women of childbearing age with Sjogren’s Syndrome seem to encounter breastfeeding difficulties at a higher rate.  Sjogren’s Syndrome is an autoimmune disease that attacks the moisture-producing glands in the body, rendering them basically useless.  The most common targets are the salivary glands and tear ducts.  But what about the milk-producing glands in the breasts?  No one really knows.  Nine out of ten people with Sjogren’s are women, but it generally doesn’t strike until they are past their childbearing years – usually in their 40s or 50s.  I am an exception: I have had primary Sjogren’s Syndrome since I was ten years old.
To control my symptoms, I take 400mg of hydroxychloroquine every day, even during pregnancy.  Hydroxychloroquine hasn’t really been studied in pregnancy, but the fact that it controls my symptoms and hopefully keeps the levels of the “bad antibodies” at bay is definitely more help than hurt.  Sjogren’s Syndrome carries some risks for the baby, most notably the development of neonatal lupus and its various presentations, the most problematic being a heart block, from “bad” maternal antibodies that cross the placenta.  Neonatal lupus disappears when the baby is about 6 months old, after the antibodies from the mother leave the baby’s system, but if there is a heart block present, it may be there to stay.  Because of the risk of a heart block and a few other potential issues, a pregnancy for a mom with Sjogren’s is automatically classified as high-risk and requires extra monitoring by a perinatologist.  We have been very fortunate that our daughter has a perfectly healthy heart, although she did develop a mild skin rash from neonatal lupus that disappeared when she was around five months old.  Our second daughter is currently baking (due in March 2011) and her heart looks great so far too, so we are thankful for that.
Anyway, back to breastfeeding.  I was delivering in a Baby-Friendly hospital, which I knew would help, and I was prepared to do whatever I could to enable breastfeeding.  I got a preemptive script for Reglan, and started taking it the day that my daughter was born.  I put her on the breast every 2 hours religiously and pumped every two hours with the hospital-grade pump.  My daughter wasn’t the best nurser early on – she was born at exactly 38 weeks and although she was quite healthy she was a tad lazy in that department.  Lactation consultants visited and were somewhat helpful although dismissive of my nagging concerns that my daughter wasn’t getting anything out of her efforts. Pumping yielded a few drops each time.  I was told that this was normal and that my milk would soon come in.  
Per hospital protocol, the nurses tested my daughter’s blood glucose levels and found, the first time, that they were barely passable.  They next time they tested, her levels had dropped below a certain threshold and the nurses fitted her with an NG tube for syringe supplementation.  After she would nurse, I would give her 10-20ml of formula just to keep her blood sugar up.  Her levels stabilized, and they removed the NG tube when we left the hospital, but I was instructed to continue syringe supplementation until my milk came in.  
At home, I continued with the intense nursing/pumping schedule, and also continued the Reglan.  I can’t even begin to describe what a mess I was.  My daughter wasn’t a terribly fussy baby, but she wasn’t sleeping very well at all, and I was getting next to no sleep since I was pumping and nursing so frequently.  I also noticed after a few days that I had started to feel a bit crazy – maybe it was the lack of sleep, but I was worried that it was the Reglan, because my reactions to drugs tend to be in the form of panic/anxiety.  I was still getting mere drops from pumping.  I still hadn’t experienced any engorgement or breast changes.  
We had to take my daughter for a weight check a few days after we got home from the hospital due to all of the blood glucose issues and her dropping weight.  I don’t remember how much weight she had lost from birth at the first check, but it was significant.  Her pediatrician asked me if my milk had come in yet.  I remember that day that my breasts felt sort of tingly, almost like they might be gearing up to do something, so I told him that it hadn’t yet but I was hopeful it would happen soon.  
After the mild tingling sensation, my pumping sessions increased from drops to about 5-10ml per session.  I guess that was my version of engorgement!  I talked to a few lactation consultants and a La Leche League leader, and they all said that I should just keep trying, that my body was just taking a bit longer than usual, and that up to 8-10 days was still technically “normal.”  I told them about my disease and the effect that it might have on my ability to breastfeed, but they seemed convinced that every woman can breastfeed if she just tries hard enough.  
We took my daughter back to her pediatrician for another weight check when she was a week old.  I do remember exactly how much weight she had lost by that point – she was down to 6lbs 1oz from her birth weight of 7lb 3oz.  The pediatrician asked me again about my milk coming in.  It still hadn’t – or maybe it had? – but at any rate my daughter was getting basically nothing but the formula via syringe and her weight reflected that sad reality.  
I was so tired.  Completely exhausted.  I was very upset about my daughter’s weight loss and the implications – I had been starving her, even though I knew it wasn’t really my fault, as I had been trying harder than anyone should ever have to try to breastfeed.  Even though I had known that there was a possibility that my breasts wouldn’t produce enough milk, or maybe even any milk at all, I was woefully uneducated about other options because I didn’t believe (and neither did anyone else to whom I had reached out to for help) that breastfeeding just doesn’t work out sometimes.  
We left the ped’s office and I knew that I was done – I had accepted that I could pump 24 hours a day and it wouldn’t make a difference, and my daughter needed to eat SOMETHING.  But I called the LLL leader one more time and she suggested an SNS, just to keep my nipples stimulated and hopefully get me on the road to milk production.  I thought about it for a bit, and realized that I was simply too tired to try any longer.  What was the point?  I stopped the grueling nursing/pumping schedule.  My breasts never made a peep.
My daughter was exclusively formula-fed starting at day 8.  I did deal with some pitying glances and comments from people who didn’t know the whole story, but overall, I had support, especially from my mom, even though she exclusively breastfed both me and my brother before it was “cool.”  It would irritate me when people would say things like “well, at least she got colostrum from you” or “well, some breastmilk is better than none” because honestly, I don’t think she got anything measurable from me at all, and I would have much rather she been happily formula-fed from day one.  
Looking back, I think that for me and my health issues (and medication) that formula feeding is truly the best choice for our family.  My husband brought that up a few weeks after we made the choice to stop trying with the breastfeeding and I think he is 100% correct.  He and our other extended family members love the opportunity to participate in feeding and it gives me a break and provides me with additional sleep.  Plus, pumping is the single most exhausting thing that I have ever done, and sleep deprivation and exhaustion is the most effective way to get my disease into an active flare.  
We are planning to start our new daughter on formula from day one.  If my milk comes in with any measurable amount, great, maybe I will pump – maybe.  Our first daughter did so well with formula that I really don’t see a reason to put myself (and of course Baby Sister!) through what we went through the first time.  We are so fortunate to live in a time and a place where a safe and healthy alternative to breastfeeding exists.
Through my experience, I have come to believe very sincerely that breast is NOT always best, and also not possible for everyone.  I also do not believe that the health benefits of breastfeeding are anywhere near as significant as the headlines make them out to be.  For me, it comes down to this – I don’t care how you feed your baby, as long as you are feeding your baby!  I am hopeful that there will be more research done about the myriad of causes behind a woman’s ability or inability to produce breastmilk and that we will all, someday, be better-informed and more supportive of each other as moms who are in this together.   
***
Want to get something off your chest? (Pun fully intended.) Email me at formulafeeders@gmail.com and share your story for the FFF Friday series.

Suzanne Barston is a blogger and author of BOTTLED UP. Fearless Formula Feeder is a blog – and community – dedicated to infant feeding choice, and committed to providing non-judgmental support for all new parents. It exists to protect women from misleading or misrepresented “facts”; essentialist ideals about what mothers should think, feel, or do; government and health authorities who form policy statements based on ambivalent research; and the insidious beast known as Internetus Trolliamus, Mommy Blog Varietal.

Suzanne Barston – who has written posts on Fearless Formula Feeder.


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29 thoughts on “FFF Friday: “I was woefully uneducated about other options…”

  1. My mom acquired that one after her RA was diagnosed. Fortunately for her that was long after her children were grown. I'm so sorry people have been so discouraging. Breast is most certainly not for everyone and luckily we have a perfectly good replacement. Enjoy your new baby!

  2. I don't know if you've read my stories on here, but I became very ill from late stage Lyme soon after I had my son, and I have very similar feelings about formula feeding my next child. I plan on starting formula from day 1 because I know that keeping my health up (and not becoming exhausted) is critical to my staying healthy, which, if you can believe it!, is a huge part of being able to adequately mother!!

  3. “My breasts never made a peep.” – I love this. I laughed when I read it because I knew just what you meant! I'm glad you have a lot of support around you. Enjoy your sweet baby!

  4. My grandmother had Sjogrens although she wasn't diagnosed until she was in her 70's. I do know how uncomfortable it was for her. I think it's sad how dismissive people can be, even healthcare professionals, of autoimmune disease that doesn't always have visible symptoms. Although pumping all the time worked to keep my supply up, I know this does not work for other people who suffer as I do from thyroid disease.

    Congrats on baby #2!

    Sidenote: Suzanne, like 6 months ago, I emailed you my submission for FFF. Just wondering if you still have it and if you might know when it might go up? Thanks. KW

  5. I'm glad everything worked out and that you aren't beating yourself up for something that 1)you had no control over and 2)even if you had oversupply, but didn't want to BF, you still wouldn't need to beat yourself up. :)

    congrats on #2!

  6. I also have immune system issues and had trouble with supply while breastfeeding. I wonder how common this is? Certainly I hadn't read of it being an issue. I was undiagnosed at the time and I honestly believed that old line that few women don't produce enough breastmilk. I was so hard on myself. Now I am diagnosed and my specialists have agreed that it possibly affected my ability to breastfeed I do feel a little vindicated.

    My daughter took 5 weeks to get back to her birth weight after I started supplementing at 3 weeks! I don't look back at my doggedness to breastfeed with any sort of pride.

  7. “For me, it comes down to this – I don't care how you feed your baby, as long as you are feeding your baby!”

    DITTO.

    And congratulations on your new baby!

  8. Thanks, everyone! I really wish that more was known about autoimmune issues and breastfeeding, there just doesn't seem to be much research out there (that I can find!). As autoimmune diseases have become more common, I would imagine that this is an issue that affects more and more women all of the time. Thanks again for your comments and support!

  9. Hi – I hope I'm ok to post here, given I bat for the other side as it were 😉 but I really wanted to comment on this post I was linked to – I hope it can be read with the spirit it was intended.

    Firstly, my heart really does go out to you for the experience you had with your first child – I think to try everything and not achieve must stir a whole host of emotions; and I wanted to pick up on a couple of really good points you made.

    QUOTE I am hopeful that there will be more research done about the myriad of causes behind a woman's ability or inability to produce breastmilk and that we will all, someday, be better-informed and more supportive of each other as moms who are in this together.

    and

    QUOTE I really wish that more was known about autoimmune issues and breastfeeding, there just doesn't seem to be much research out there (that I can find!).

    You're absolutely right – in fact the research into lactation failiure is scant to say the least.

    So we have to ask why?

    This is a really good article on the subject and showing some research stats:
    http://bfmed.wordpress.com/2010/04/24/when-lactation-doesnt-work/

    If breastfeeding doesn't work, and donated breastmilk is not a viable option – of course formula feeding is better than not feeding a baby. But ultimately mums who use it, then feel differently:

    QUOTE
    We are planning to start our new daughter on formula from day one. Our first daughter did so well with formula that I really don't see a reason to put myself (and of course Baby Sister!) through what we went through the first time. We are so fortunate to live in a time and a place where a safe and healthy alternative to breastfeeding exists. I also do not believe that the health benefits of breastfeeding are anywhere near as significant as the headlines make them out to be.

    So whilst on the one hand many mums will say they know “breast is best” – many feel we are fortunate to have such a convenient alternative – and that the risks are not as significant as the research shows (which on an individual basis may indeed be true – we all know healthy formula fed infants and sick breastfed ones right? but on a Nationwide scale the impact IS significant) why search to find out why women can't do it in the first place? Nobody is ultimately bothered because it's not in anyones interest.

    We so rarely read formula feeders campaigning for better support to breastfeed – instead it's the breastfeeders that are doing it! Why? Because (as I know from when I used formula) admitting it is lacking in an awful lot found in breastmilk is upsetting, we all want the best for our babies and so we say the baby is “fine” and formula is a godsend to us!!

    But ultimately such wide acceptance of “formula is nearly as good” is the reason nobody is bothering to find out why lactation fails. If mums accepted that yes in their situation formula WAS the only option, they did their best but for whatever reason it didn't work – and heck we're not going to just accept second best is good enough we're going to campaign for more and better breastfeeding support; perhaps there would be more incentive for change.

    I feel quite sad that because of your last experience and your condition, you don't plan to breastfeed at all. Even drops of colostrum are valuable and I've supported mums who are unable to maintain or generate a full supply, that have used a supplementary nursing system at the breast. Ultimately breastfeeding is about a lot lot more than food, even without a full milk supply, there is no reason you or your baby need to miss out on the sensorial/physiological/psychological reasons.

    AA

  10. @AAA,

    You are absolutely welcome to post here, and I am glad that you do, as I think it's important for both “teams” to dialogue constructively.

    My only concern is that FFF Fridays are meant to be confessionals, and I want it to remain a safe place for women to vent about their experiences. I thought your comment was fine until the last paragraph, which I'm afraid was not particularly supportive of Kira's choice. She has made a decision that in my mind (and the philosophy of this blog) is valid and right for her; she wasn't asking for approval or admonishment. I would no sooner tell her “good for you for not breastfeeding! It sucks!” then I would chastise her for not giving her child colostrom or missing out on benefits that are likely not going to be enjoyed by someone who is opposed to nursing due to a bad experience. Neither is my place, you know? Especially not as some random person on the internet who read a few paragraphs of her story.

    As for the rest of your comment – I think you make a great point. However, I disagree that it's only the breastfeeders fighting for breastfeeding rights. We have discussed this on the blog a few times, and my point has always been that (some, not all) breastfeeding advocates are missing out on a strong community of women who would LOVE to fight for these rights – women like Kira, and myself, who are pissed about the lack of good research out there – research that is carried out to help women breastfeed rather than tell us again and again how amazing it is – and REAL support, not judgmental b.s. But we get alienated by sanctimonious attitudes and a total disregard for the concept of relative risk. It's unfortunate, b/c we should ALL be demanding better rights and research for infant feeding and care in general – not just breastfeeding – and if we worked together rather than wasting time fighting over who is right, we might get somewhere.

  11. Hi
    Thanks :)
    Sorry I did not realise its “confessional” nature (although confessional is an unusual choice of language!)

    I'm also sorry if it read I was “chastising” the new decision, that truly wasn't my intention. Sadly many many mums are not aware that there are any reasons to breastfeed beyond “the milk”, and are rarely encouraged to continue if they cannot produce much milk (well not beyond orders to pump pump pump!!)- it's often viewed solely about nutrition, one milk v another. I DO feel sad that because of supply issues, both parties often miss out on all the other aspects of breastfeeding – when really a situation could be tailored IF MUM WANTED to ensure mum didn't have the pressure/stress last time, yet still allow a normal start to life; yet how many are even made aware of this?

    I totally appreciate your comments and I think unfortunately there are alienating attitudes on both sides – those supporting breastfeeding and striving for change realise how damaging the “formula is nearly as good” concept started by AF companies is on so many levels – whilst those using formula often relay this concept “ok breast is best but formula is FINE”.

    There is also a LOT of money involved to ensure both sides don't come together and co-operate – this would be potentially a financial disaster!

  12. AA – while I appreciate where you’re trying to raise awareness that there are other benefits besides nutrition to BF your POV is one that is not open to what is “our” POV.

    Although you may believe the research overwhelmingly points to numerous benefits to children’s health outcomes, from the current scientific point of view it really is not. That is where the divide stems, and where your comments can come across condescending. AND yes formula is a God send for many women. Echoing what FFF said, it’s about relative risk. Yes, formula doesn’t have what breast milk does, but considering our personal situations it’s the best for us.

    It may be difficult for someone who has never gone through what some or most of us on FFF have, to truly understand that those “sensorial/physiological/psychological reasons” to BF just didn’t exist or were a negative experience. So, if Kira couldn’t nourish her child and was having negative physiological/psychological ramifications, why in the world should/would she BF her next child?

    I also think your statement about FF not supporting better BF support is very jaded and wrong. Many of us are fully behind supporting mothers who want to BF to do so to the best of their ability. I am personally helping a close friend of mine succeed at BF her newborn b/c she doesn’t get it from her family and because she wants to and she is able.

    So, while you may want to shed light on the subject your approach and message is lacking.

  13. I sometimes feel that nomatter how carefully I phrase things, put a disclaimer etc – there are always some who just want to infer my post suggests things it does not! I'm sorry you felt my post was “condescending” – as I said before, not my intention (and please remember there is no tone/facial expressions on type so a reader can take a comment 20 different way!)

    I feel however in claiming:

    QUOTE Although you may believe the research overwhelmingly points to numerous benefits to children’s health outcomes, from the current scientific point of view it really is not. That is where the divide stems, and where your comments can come across condescending END

    That you have now put me in a position that if I reply, I will be accused of “making mums feel bad” or suchlike…well that's normally how these convos go right?

    I don't think there are any health benefits to feeding a human child, human milk – I think it's just the norm to be honest. When you look at what's in breastmilk, it doesn't take research to see the alternative is lacking many consituents and what the impact of this is likely to be. Sure the research supports this, but really it's just logic. One milk contains something that kills 40 types of cancer, one doesn't – cancer rates are significantly higher in the children receiving the second milk. Do we need a scientist to prove beyond all doubt? Na we need one to prove going without that substance DOESN'T cause problems – an angle that could be tricky.

    I also think to be fair you are making far more judgments and assumptions in your post than I.

    I never suggested that the terrible breastfeeding experience many have had included “sensorial/physiological/psychological reasons” – my point was that doesn't mean with the right support the mum can't have these benefits next time around if she chooses – which many mums are never told (and apparently seem quite cross to be told!)

    I also never said that ff'ers didn't support bf'ers! (or if I did please tell me where?)

    I'm talking about actively provoking change on a bigger level – and to be honest I think your post perfectly sums up my point. As for my message being lacking – I think the link I left in the first post covers it well :)

    AA

  14. AA-
    No, I don’t think that you are here to make mom’s feel bad. I think your message could have been much more compassionate and conveyed more clearly.

    I don’t wish to have an argument about what you see in the data vs. what is actually there or not. I am familiar with HAMLET, but have not seen a well constructed study that shows a “significant” increase in childhood cancer for FF babies. The science hasn’t proven that going without BM causes overwhelmingly bad outcomes; again relative risk. We can talk in circles to death.

    I do see some of your comments being just semantics, but maybe that is not how you see it. I don’t know.

    “We so rarely read formula feeders campaigning for better support to breastfeed – instead it's the breastfeeders that are doing it! Why? Because (as I know from when I used formula) admitting it is lacking in an awful lot found in breastmilk is upsetting…” not so sure that is effective in making your point and translates into FF not supporting BF. It’s not just BM that needs to be championed; it’s accurate, transparent (not filtered or spun) information for all infant feeding.

  15. QUOTE I am familiar with HAMLET, but have not seen a well constructed study that shows a “significant” increase in childhood cancer for FF babies.

    Have you seen a well constructed study that shows going without HAMLET DOESN'T increase cancer? To me that would make a lot more sense ie prove the synthetic version that's missing hundreds of stuff doesn't increase rates of the diseases these lacking agents protect against

    Of course it's “relative risk”, if a mum has no milk for her baby, any other risk is miniscule because the biggest one at that time is dehydration and ultimately death. But what about the “relative risk” of all the other stuff not in formula (HAMLET is only one from hundreds)

    But again this seems to have been turned into breast isn't actually better anyway debate – which oh so often seems to happen as per my previous posts. But then working out why women have lactation failiure then doesn't matter does it? if there's an alternative that is just as good why bother?

    I note you haven't made any comments about the article I posted – You know the one which discussed the topic in hand rather than just picking the wording on my posts to bits?

    The point was why there is no research done – do you agree or disagree with the link posted? what are YOUR views?

  16. Like it or not, formula is here to stay and mothers should have all the support they need no matter what they feed their babies, for how long or why they do or don’t. When people start quantifying what is an “acceptable” reason for not BF (like death and dehydration) is when you turn people off. The relative risk is a personal decision. For you, going to the Nth degree to make BF work is your belief in relative risk. That degree is different for other mothers and that should be respected.

    I do agree with you about BF being the way babies are biologically meant to be fed and wholeheartedly support for normalizing BF. No argument there. Whether or not the alternatives are bad for babies is where too much time is spent and derails many lactavits’ efforts. IF we can switch the focus about helping mothers achieve their BF goals, (a woman’s choice) not which one is believed to be better or not, I think there will be more resounding support as a woman’s reproductive issue.
    I had read Dr. Stuebe’s article previously and agree with the last 2 paragraphs.
    There is another benefit of lactation failure research, in that there are a lot of LCs and proponents of BF out there preaching EVERY woman (minus the woefully underestimated 2%) can BF and deny there are real issues. If there were more research into the matter it would help everyone understand what is going on, identify issues quickly, and if there is a way to “fix” it.

  17. QUOTE Like it or not, formula is here to stay and mothers should have all the support they need no matter what they feed their babies, for how long or why they do or don’t. When people start quantifying what is an “acceptable” reason for not BF (like death and dehydration) is when you turn people off.

    I agree mums should have the support – and I wasn't for a second quantifying what was an “acceptable” reason, it was one example based on the situation above!! Not a list of acceptable reasons – again you are looking for something not there in my text.

    QUOTE Whether or not the alternatives are bad for babies is where too much time is spent and derails many lactavits’ efforts

    I disagree with this – basically because I agree with informed choice, and often the parents are basing their initial decision of whether to even try bfing in the first place based on bumf provided by the company making the profits. As this article points out, because there is something sold as “nearly as good”, nobody is really bothered in solving the real issue.

    So I do think both things are hevily interlinked.

    Re real lactation failiure or perceived – this is so difficult because lactation can fail due to external influences as well as internal “functioning”. Again coming back to the above, I was with a mum who had a TT baby the consultant refused to snip – when she asked how she was supposed to breastfeed he said to not make a big deal, not to feel guilty and give a bottle….

  18. Look obviously, you and I disagree on what the research says so what you see as a correct informed choice is not what I see as a correct informed choice. Data that is spun or picked apart, and magnified beyond the original scope is not an informed choice. And I am not just talking about formula companies. If you wanted to go “tit for tat” there are just as many BF supporters mis-“marketing” as the formula companies.

    Whether or not formula is “nearly as good” is again, a relative risk issue. Yes, the data in many people’s eyes is “nearly as good.” To you that “nearly” is not acceptable and to others it is acceptable.

    In this country the overwhelming majority of mothers initiate BF so; I don’t think that formula companies’ marketing is the underlying issue here.

    If the goal is to get more woman supporting BF research, instead of focusing what you perceive the data to say (when others disagree) may not be effective.

    That is very sad that the woman you spoke to had that experience, but again there are many examples of the opposite happening too; and neither are helping women feed their children they way they want. Ultimately, that should be the goal.

    I have no desire to keep going ‘round and ’round on this with you. I think I am making myself clear.

    @ FFF and Kira I apologize for hijacking this post…

  19. As someone with multiple autoimmune issues, I certainly can relate to how it makes BF difficult, if not impossible. Many immunosupressants that are necessary to control the disease are absolutely incompatible with breastfeeding. With my first child, my supply was fine, but I had Reynaud's of the nipple, that was excruciatingly painful. I developed what is thought to be RA while pregnant with my second child and chose to bottle feed from the beginning so I could ameliorate the fatigue (I fall the more tired I get) and get back on my medication regimen. Very happy with my choice!

  20. I somehow missed this post but I just want to put in two cents. Actually, I don't know if I want to cry or hit something. I have never read a more sanctimonious judgement of people with auto-immune disorders or other such conditions as I have out of the misnamed Analytical Armadillo. Granted, she has a history of poking around FFF and stirring up trouble, but I didn't realize just. how. hurtful. she could be.

    I spent a lot of time as a disability advocate at my university because of the attitudes of people like AA. People for whom nothing but the textbook “best” is good enough. I am so angry right now it's hard to put this into words, but AA, you couldn't be more of a heartless…jerk…than you were in this thread. You. Have. No. Idea. What. You. Are. Talking. About. To get on a thread in which someone poured her heart out about how breastfeeding didn't work for reasons that you people do not even acknowledge is morally reprehensible. I find it disgusting, especially when, in the same breath, you accuse us of not understanding what it's like to stick up for someone's right to make a healthy decision. You are doing the very thing you say you're against.

    I also find it disgusting, and yet enlightening, that you're considered a well-respected voice for breastfeeding. To put it bluntly, you and your…ILK…are part of the problem. You are part of the reason more women don't breastfeed–when they can't do it the way YOU want them to, you are there sneakily undermining their confidence, their judgement, their ability to cope with the day. You do everything you proclaim the formula companies do in spades. Your subtle snark only serves to set you up as some sort of goddess and everyone who doesn't do it your way as some kind of heathen.

    I highly encourage you to check out butyoudontlooksick.com, especially the Spoon Theory: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

    Most of us aren't the apparently perfect physical specimens you are. Some of us don't have the spoons you do. Some of us barely have the spoons to make it through the day. Some of us were told we should never have children but are trying every. damned. day. to make life better for our kids than it is for us. That you come here and condemn people just for not having enough spoons is so outrageous, it makes me sick. I hope you never have to go through a tenth of what people with AI disease have to go through; clearly you are so inflexible that you could never hack it.

  21. Well Mrs Spock, for all your ranting you don't seem to be able to read particularly well, given I did not say nor imply half the things you said. My post was not about immune conditions – but the yet again incorrect message being sold that formula is nearly as good.

    As for “Granted, she has a history of poking around FFF and stirring up trouble” – that is completely untrue. I visited initially because FFF commented on my blog. I THOUGHT (wrongly) it was intelligent conversation, about evidence based material and so commented a couple of times. Since it became clear some here are not capable of such, and that here a snippet from an entire paper is twisted and then portrayed as “fact”. I haven't visited since until this arrived in my mailbox this morning.
    Rest assured I will not be visiting again and have unsubscribed to the thread!

    And for the record, I'm a well respected voice FOR evidence based facts and my client base includes a lot of bottle and formula feeding mothers – so you know little about me.

    I thougt I could GENUINELY offer some information to mothers who had problems they could not overcome – breastfeeding support only seems to focus much of the time on positioning and attachment, beyond that mothers can be left eith no real help and feeling bad (after they have been told for 9 months “breast is best” – it's not its nothing more than normal and the milk our species is supposed to consume). No exploration as to why mum isn't producing milk, has chewed nipples or even a look in baby's mouth to see if there is an oral abnormality. I hear mothers here claiming nobody cares why they can't lactate, people just want to make them feel bad – yet the poisonous outpourings from people like yourself, are precisely what prevents mothers getting accurate information, and keeps the myths perpetuating.

    This isn't a place for support or information, it's a bubble in which women can try and convince themselves the facts aren't true – and rant at anyone who dares suggest otherwise. It's not about WHY women had problems to try and help them process that experience so they can make an informed choice next time – a FFF group that could actually make a real difference. It's about back patting and “yes of course something lacking a few hundred vital constituents is as good – the evidence isn't really THAT compelling, otherwise, honest”. Darn those “breastfeeding nazis” and their quest to TELL women the facts about formula – those milk companies making multi millons from our babies are the ones who know where it's at 😉

    No doubt you will go into rant overdrive again at reading this, luckily I won't have to read it!

  22. If there is ever a textbook case of missing the point, it's this. I've poked around AA's blog and FB page, and I can see that her attitude here is reflected in her posts. Her attitude is to undermine any woman who has chosen differently than she, regardless of her reasons. She may feel her halo is on straight, but it's attitudes like these that we need post-BFing bully support groups.

    The sentence “It's not about WHY women had problems to try and help them process that experience so they can make an informed choice next time…” betrays her inherent biases, which are typical of militant lactivists. She assumes the original poster didn't make an informed choice (because she didn't choose the way AA wished her to). As if the original poster isn't thoroughly aware of how many spoons she has each day and whether she'd have enough to breastfeed a second child given her condition. Again, AA proves great ignorance here; people who suffer from chronic disease are ACUTELY aware of health and are willing to do what it takes, however major or minor the change may be, to accomplish the best health they can manage. They become experts in weighing risk vs. benefit for themselves–and as anyone who knows anything about auto-immune disease knows, that can vary greatly from person to person. AA does not know what's best sight-unseen, nor does she have the medical credentials to help make an appropriate risk/benefit analysis, for someone in this population. Obviously, she's also lacking in the compassion department, which is another chronic and terrible problem in the chronic disease community. Well-meaning advice can still be cruel.

    I find it sad that so much effort is spent defending poor, medically unsound, one-size-fits-all breastfeeding advice when people with a decent reach, like AA, could be such a powerful force for good, as opposed to promoting the misunderstandings, misinformation, and lack of compassion that people (especially moms) with chronic disease face.

  23. Kira–I was diagnosed with Sjogren's 11 years ago and just had my second baby 2 weeks ago. I could not carry either children past 37 weeks due to abnormally low amniotic fluid. Not surprisingly, my breatmilk supply is extremely low also. I am trying the best I can to feed my newborn breastmilk, supplementing with formula as instructed by his pediatrician, and am hoping that I am more successful with the breastfeeding this time around.

    While there is minimal clinical evidence to support that our childbearing struggles are a result of Sjogren's, those of us who suffer from it share too many similar experiences for them to be a result of mere coincidence. Perhaps one day there will be more scientific evidence; then the naysayers might finally rest. Those who do not suffer from autoimmune disorders cannot possibly comprehend the impact such diseases have on our lives.

    I'm proud of you for trying as hard as you did AND for making the best decision for you and your family!

  24. I'm pretty late to this post, but I thought I'd comment anyway. Having health issues myself I can really relate to this story.

    To tell you a bit about me, I have hypothyroidism, fibromylagia and vulvodynia. I do not yet have children. When being diagnosed with these conditions, I wanted to know (among other things) what implications they would have in terms of having children. I've learned I'm at high risk for BFing difficulties. When the time comes, I might try combo feeding or might go straight to exclusive FFing. I think EBFing would put too much stress on me. I'll need to know that someone else can feed my child. My hypothyroidism and fibro may both get worse for a while after pregnancy, in which case I will not be able to go to the lengths many of you ladies have in an attempt to breastfeed. And yes, it might be simplest to FF from birth. And simple is good when you're chronically ill, trust me. I completely agree with you and the other posters with major diseases when you say you don't understand unless you've been there. I've had days when I was too exhausted to shower. If somebody suggested I pump every 2 or 3 hours in that state, I wouldn't know whether to laugh or cry. Don't get me wrong, what a mom is willing to do to BF or whether to try at all are very personal decisions. Your answers to those questions might be very different from mine. And that does not make either one of us wrong.

    Congratulations and enjoy your little ones!

  25. I have Sjogrens and am expecting my second baby after 4 years of infertility (male factor) and an IVF cycle… I was unable to breastfeed my son and at the time I found I received no help from any of the nurses or staff and many seemed to feel that my “diseases” was just an excuse for not giving it a real go. I was …. to put it lightly, devastated I was unable to do something that… well I should be able to do… as a mother, for my baby… and I wanted that bonding, that closeness.

    I do intend to try again because at the time I was not really aware that it would be an issue, it was something my immunologist was unsure about me being his only patient to ever be of child bearing age…. I know there is a chance it won't happen, a very high chance… I would even settle for just one session with baby latched so I know what that experience feels like. But I refuse to beat myself up about it…. This baby will be fed by what ever means is needed for my situation, I have promised myself I will not do the same things I did 5 years ago with my son…. doing the same actions over and over and expecting a different outcome is just insanity and I intend to fully enjoy my precious little miracle something that is imposable to do if I am spending all of my time stressing about my milk supply and weather baby is getting enough of what he or she needs.

    I want to breastfeed for selfish reasons…. Heath (my son) is a perfectly Healthy 5 year old… very intelligent just as any other 5 year old is regardless of how they were fed in their first months of life, but to experience what it is like to feed my baby…. put him or her to my breast that is something if I don't experience in life I will forever wonder what it was like…..

    I guess I am posting for 2 reasons… 1 to thank Kira for posting….. it's hard to find women who have been in our situation, or to find any information on the matter and just reading your post brought me a sense of peace as well as the feeling that I am not alone in my struggle with Sjogrens.

    Secondly I wanted to post a little about my story and feelings on the matter so that any other women who come across this post in their travels to search for information on Sjogrens and breastfeeding can feel a little more comfort that they are not alone in the battle and that there are those out there who know what your going through!!!

    Claire

  26. I am going through this exact same thing now, and having so much trouble getting help. So much of what you have said rings true to me, and I have been feeling so so bad for my baby girl, that she is suckling so hard for over an hour at a time and remains hungry. I’ve started to give her formula for her main meal, with a go on the breast for ‘dessert’ so to speak, as I don’t think it’s fair to make her work so hard for nourishment when she is hungry.

    I googled Sjogren’s nd breastfeeding because I was desperate and don’t see my rheumatologist for another week. My condition was under control throughout the pregnancy so I saw an antenatal specialist who looked after the formation of the placenta and monitored baby’s growth etc. But since she was born 11 days ago I have had no specialist help with this. In fact most people say keep trying, you are doing a great job etc. But I am emotional, tired, sleep deprived, my mouth is sore from Sjogren’s but exacerbated by the dry mouth caused by breastfeeding and my baby’s long hours spent at the breast. I can’t eat much due to the mouth soreness which leaves me feeling even more depleted.

    A few days ago I felt so awful I thought about walking away from it all. With the support of a lovely husband, great family and the best friends in the world I have turned a corner and am seeking practical help. I called my rheumatologist and begged for a telephone consultation two days ago, and I sent her a desperate email explaining the details in case I got too upset to explain on the phone. She left me a message saying she will speak to me tomorrow afternoon, so I’m hanging in there.

    I’ve been trawling the Internet and found this blog post which was great for maknig me feel like I’m not in this alone. I also found this more academic link which might be useful to others:

    http://www.breastfeedingmaterials.com/ask

    I am going to print both these things out and highlight the most important passages for any healthcare or breastfeeding professionals (or just annyoing judgemental people who look down on me for not breastfeeding exclusively) so that they can see that this is a real issue.

    My baby’s birth has coincided with the first anniversary of the death of my beloved father, and it’s already such an emotional time, which has been amplified by post-partum hormones. I think this is the hardest thing I’ve ever been through in my life.

    Thank you for writing this blog. I think you’ve saved my sanity and my relationship with my daughter. I know I’m trying my best and bottle feeding her is not the end of the world. She needs a happy and healthy mum more than she needs the special nutrients found in breastmilk. I read that certain drugs can help in milk production, but for obvious ethical reasons they cannot be tested on pregnant or breastfeeding women. I’ve decided that I’d rather put my child on formula which has been proven to be harmless, rather than expose her to the potential side effects which could never be tested accurately given the small numbers of women like us, who have Sjogren’s during their childbearing years.

    Thank you on behalf of my entire family. x

  27. Pingback: The Sjogren’s connection | Expectant Hope

  28. I had a boy in 2005 and too looked forward to breastfeeding. Milk never came in. I had a daughter in 2007 and again no milk. My son had a rash when he was born but did not bother him and went away in less than three months. My daughter had the worst dried cracked wrinkled skin. She is eight now and has a very mild case of excema and my son will soon be 10 and he has ADHD with behavior issues. I was Diagnosed with Sjogrens in 2009 and now have a list. When I was pregnant I could never get enough to drink. I thought I was diabetic, but I was not. I have Sjogrens, SLE, Blepharitis, Raynauds, GERD, Dysautonomia, CNS and more
    Everyone at the hospital made me feel like I was not normal. No one mentioned there might be a disease involved. Ha last Rheumy I saw said Sjogrens is not disabling and would not help with my job and I was let go. Have new Rheumy who knows more and educates me.

    Good Luck.

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