Executive Summary

I had a thought today that I would like to know the answer to. With so much publicized research being done on the properties of breast milk (antimicrobial, stem cell properties, brain development and so on), where is the research into real lactation problems? Where is the safe approved drug to increase milk supply (Metclopramide isn’t really ‘safe’ and Domperidone isn’t really ‘approved’), where are the actual diagnoses for supply problems? Maybe companies would rather head toward synthesizing the properties of breast milk rather than helping to fix bodies to produce it. After all it’s only several hundred thousand women a year, and formula does exist (my tongue is so far into my cheek it might poke through…)

I don’t know. I suspect there is not a satisfactory answer.

So I leave you with this. A short guide to various posts that are intended to be helpful.

I need help:

How to interview a Lactation Consultant

11 things a Lactation Consultant should know how to do (IMO).

Do I need help?

I find my tongue tie resources out of date, though you can see my experience here. For better information I would urge joining this Facebook group. They maintain lists of providers and are fairly knowledgeable about what is to be expected. If a provider is not on their list people can often recommend local alternatives (for instance I know of at least 4 laser tongue tie release places in New Zealand now, but none has made the general list. Do see the New Zealand Tongue Tie resources page instead.)

I need to combination feed-how do I do this?

The big fat Combo feeding FAQ

Walking the line

Benefits of

With low supply

SNS tutorial

Nipple confusion

Managing long term

Formula

Solids

Weaning

Body Image

What is causing this?

Able

Potential causes

Birth complications

Rare vs Undiagnosed

My most popular post

Making Milk beads

And the rest of my life.

I think I no longer feel bad, because it isn’t something I did wrong. It’s purely a medical issue.  A medical issue that some people would have me believe is my fault. A medical issue I cannot get satisfactory treatment for and that is largely undiagnosed. That makes me mad.

I lie. I still feel bad and somewhat inadequate, but I no longer feel guilt. I do wonder how much of my feeling bad is a normal level for someone suddenly faced with a non-life threatening failure of a body part. Somehow I can’t imagine people feel a mix of loss of gender identity and self loathing after losing a kidney or having a splenectomy. Or losing a finger or a limb. I’m sure there are other mixed feelings but I wonder how often self hatred/loathing/failure is a part of that.

Why a correct diagnosis is important.

Or how wait and see doesn’t cut it.

For the first 8 months of my first child’s life I thought I had low supply, probably from insufficient glandular tissue. I wanted a definitive diagnosis though and couldn’t find anyone to give me one. Then around 8 months, after we’d transitioned to just solids and breastfeeding and put the SNS away in the closet I noticed something that led me to believe that a posterior tongue tie might be the real problem. I couldn’t get a diagnosis for that either, but the more I read and researched a tongue tie did seem to be present. That discovery filled me with hope. Hope that next time would be different, that there was something I could do to make things better. So I planned my next breastfeeding experience around that. I lined up tongue tie release, made my midwife aware of my history and suspicions and mostly did as I was told- to wait and see because this time things might be different. I was told different child, different mouth shape, maybe no problems this time. I was dubious, and didn’t use as my midwife anyone who refused to take my concerns seriously, but I did get some variation of wait and see from everyone I talked to.

Just to hedge my bets I drank various teas throughout my pregnancy and made all my postpartum meals full of lactogenic ingredients.

And then I had my second baby, not how I planned, in fact things went in a way I hadn’t thought to plan for, but I had her and it was ok. Not great, not bad, but ok. And there was an obvious tongue tie, not a posterior one, and there was some waffling about whether it would cause problems from the hospital lactation consultants, and my midwife went to bat for me and we got it snipped anyhow. It made the latch a bit better and things were going normally. We were proceeding with caution, and I was getting some varying opinions on whether intake was good. Some people said looks good, some people were concerned about swallow frequency. I was a little stressed out, but I was assured that if I hadn’t had any history that no one would be worried. I was cautiously optimistic. Things were already different and better by leaps and bounds in terms of latching and output and weight loss.

After 5 days we went home. My milk came in, though there wasn’t engorgement as such, just a feeling of fullness and heaviness. I wasn’t too worried. After all some women don’t have much engorgement, right? Yes, but. Be concerned when you keep running into signs and symptoms that by themselves don’t mean much but when accumulated paint a more dire picture.

We’d had 8% weight loss by day 6. Well within normal ranges. Considering last time we’d had 11%+ by day 5 and more after that, 8% was fantastic. Output was good, my optimism was increasing. There was still concern about swallow frequency, but things seemed to be going well.

By day 11 only 60g (2oz) had been gained. Normal newborn weight gain should be at least 30g/day. I’d been expressing milk on top of feeding to boost my supply and to give as top ups to combat the cluster feeding. My midwife wanted me to get more than 2 hours sleep per day to help my milk, and also because having a toddler and a newborn isn’t sustainable on 2 hours of sleep out of 24.

The baby was sleeping more and more. We were feeding on demand, but where #1 had screamed and cried and never slept unless held, this one would sleep for 4+ hours, fall asleep at the breast and was generally very lethargic. I was pumping 4-6 times per day on top of feeds, and giving that milk via the SNS. Output was still good.

And day 15 came and the weight was the same as at day 11, 210g below birth weight. And the baby was so lethargic at that point that getting her to take a bottle was over a 1 hour affair of cold cloths, stripping, changes and so on for 60ml consumed.

So now we went into disaster management mode. I was to give 60-100ml via bottle every 3 hours day and night and pump afterward. We practically have to force feed the baby at this point.

It’s been a few days of that and hopefully birth weight will be regained in another day or two and we can revisit other feeding options, or even go back to feeding on demand.

And that’s where we are now. I wish we’d known before that IGT was the issue. I wish I’d been able to get that diagnosis. I could have been using the SNS from around day 10 or before and doing test weights to measure intake rather than disaster management of a lethargic and dehydrated baby.

Now I’ll likely have to contend with nipple confusion, breast refusal and possibly losing any kind of breastfeeding relationship. I might still be able to pull this situation out of the fire, but a diagnosis last time would have made this easier.

 

Postmortem

I’ve been thinking about why some diagnoses make sense for me and others do not.  I’ve done mental lists before but I think it’s past time I did a postmortem analysis of my breastfeeding experience. Not that it’s dead just yet…

My midwives told me that it was my supply. So I pumped and I pumped, and I fed and I took herbs and domperidone… and it didn’t really seem to help. For a long time I thought baby not getting enough milk to gain weight or poop, and I can’t pump it out means it’s not there, right? Not necessarily. When my daughter was around 8 months I noticed a lip tie and read about the correlation between that and posterior tongue tie. So then I thought that was the issue, but I can make some points in favour of several causes.

I’m not sure the best way to group this. Maybe a reason for, reason against section for each suspected issue.

Symptoms in support of IGT:

I have breast asymmetry. It’s fairly noticeable. I also have stretch marks, though I’d assumed they came from puberty. I actually remember the time when my left breast grew bigger than my right. I was probably about 12-13 (I was in junior high because the memory includes wandering around that day in the halls with my hand clamped over one breast because it hurt so badly). I just remember it being painful.  My breasts look a lot like one of the pictures in the MMM book.

I don’t think that I had engorgement after birth. I did have a bit of warmth and itchiness, but not the hard breasts my midwives led me to believe I should have. Which is false anyhow, not all women have that symptom even with a normal supply.

Symptoms against IGT:

My breasts have always felt fairly glandy. If that’s a word. They aren’t very soft, instead tending to be firm. I’ve noticed them floating in the pool for the first time since I’ve had my baby.  I’ve never really gained weight in my breasts and they don’t seem to be primarily fatty tissue. As I said, glandy. I was always good about getting my yearly exams when I lived in the US (things are 3 yearly here if everything’s been normal, which it has for me), and that usually included a breast exam. You’d think someone (one of the at least 5-6 different doctors I’d had do breast exams) would have said something if there were not much tissue there… Then again, maybe not.

I tended to leak. I mean, not buckets, but changing my baby in the middle of the night, her crying would give me a wet shirt. Easily 5ml from one side and maybe 2 from the other. Also sometimes when I was feeding the other side would leak. Not enough to collect, or really  need pads, but enough to be messy.

This is a bit odd. I have some extra nipple tissue on one of my areola. So, while my breasts were not really engorged, that area swelled up like a blister. It got about peanut-in-the-shell sized.  I could get milk out of it, but it wasn’t easy. Apparently it was connected to some ducts as well.

When I was in the hospital after giving birth I had to hand express some colostrum. My baby would not initially latch well, she couldn’t open her mouth wide enough and when I tried biological nurturing style she shredded my nipples and gave me hickeys, preferring to latch onto any surface she could like a little suckerfish. Anyhow, as I was hand expressing colostrum the hospital midwives commented that at least my supply wasn’t a problem.  I know that colostrum production and milk production are not necessarily related (that is amount of colostrum does not indicate amount of milk), but it’s always made me doubt that supply was my problem, even when I was told it was.

While I don’t think my breasts did grow much during pregnancy and after, I know they did because bras from before pregnancy (still) don’t fit me. Also I had significant nipple pain during the first trimester.

I have had engorgement before to the point that one (just one, the other one has more fat on it I think) breast looked like a sack of peas. I went 15 hours without feeding or pumping when I had to travel for business. I had been accustomed to going 10-12 hours without pumping at that stage (my daughter was 11-12 months old), but the extra few hours made a big difference in comfort.

Symptoms for undiagnosed tongue tie

My baby has a lip tie for sure. She also was not able to hold herself on the breast until she could do it with her hands at over 6 months old. So I had to hold it in her mouth or it would fall out. Pacifiers (dummies) fell out of her mouth.  Even now she either holds them in with her teeth or her hand. Not that she’s much of a fan, they are more something to bite. She would leak milk when drinking from a bottle. She shredded my nipples early on. It wasn’t until 8-10 weeks that I didn’t look like ground meat from the cracking, and all the missing bits grew back. With some improvement in latch technique it didn’t hurt much after about 2-3 weeks. I did have nipple creasing for months. Since she got her upper front teeth I’ve felt them digging in to me somewhat, and she does leave little tooth indentations on me.

Her tongue has been forked in the past. As she gets larger and stretches it the fork has significantly lessened. For a while she was not able to touch her upper lip, but now she can. Nowhere near touching her nose, but she can now get the tip of her tongue over her upper lip.

She does have a ‘fence’ in her mouth per the Murphy manuever, though I can’t use Dr. Kotlow’s method of checking since it’s now a game to bite me when I try to feel what her tongue is up to.

When she touches her tongue to her upper lip the floor of her mouth tents up (as does mine…), and the sublingual salivary glands stick out (again, as do mine).

She has only rarely drained the breast, though that’s hard to gauge because my breasts don’t ever really seem to go totally soft because of the glandiness.

Symptoms against undiagnosed tongue tie

She has a pretty mobile tongue. I don’t see much inhibited movement to be honest, though I’m mainly comparing to myself, which is not a fair comparison, and she has been working on it as I try to gauge her tongue mobility by making faces at her. Perhaps it’s improved as she’s gotten bigger. She doesn’t have much in the way of frenulum either, though I know with PTT that can be the case.

Symptoms for PCOS related complcations

I suspect my grandmother had some form of PCOS. She told me she got her period at age 10. I got mine at 11. I have elevated androgen levels and issues with carbohydrates and my weight. If I do have some form of PCOS the onset was when I was around 20. One lactation consultant told me my issue was probably PCOS related (no breast exam for me, no oral exam for the baby though).

Symptoms against PCOS related complications

I have completely regular periods (I’ve been irregular twice I can think of and once was after a miscarriage). A lot of doctors have hinted at PCOS, but no one has ever felt able to make a diagnosis. While I do experience mittelschmerz, no cysting has ever been observed during ultrasounds.

Other ‘what does it mean?’ issues:

I was living in an agricultural area before and during puberty. I had also been consuming large volumes of soy products (dairy free from 8 to 13, then dairy and soy free) and been put on various calorie restrictive diets by my family from age 8 including a diet from age 13 to 17 that did not allow me to eat sugar, wheat, dairy, soy (as I had developed an allergy), any fruit other than grapefruit and lemon. I also experimented with veganism during this time (though that didn’t last long). I skipped a lot of meals, not eating for up to 12 hours at a time (sometimes longer) until I was in my early 20’s.

Fenugreek did not work for me. I couldn’t take enough to get the ‘smell’ and I didn’t see any difference with the amount I was taking (up to 12 pills daily. I also tried spoonfuls of soaked seeds as well as fenugreek seeds cooked with barley and tea made from a spoonful of seeds). Domperidone seemed to decrease my supply, or at least my let down. Blessed thistle made it so I did not have to supplement at night times and fennel and oatmeal were some of the more helpful things I tried. Anise seed, licorice root, red clover and nettle were also helpful. Vitex increased my supply, though I didn’t try it until after 12 months.

I’ve been lucky enough to have a fairly robust, if apparently insufficient,  milk supply. Since pumping at work and altering my pumping schedule until I no longer pumped I noticed that it would take at least a week to stop feeling discomfort from a missed pumping session. I only ever pumped 30-50ml per session combined. I expect the 18 hour per day feedings and excess pumping in the first 6 weeks helped me lay down adequate prolactin receptors so that my supply remained robust.

Prior to getting pregnant I had been having 9-11 day luteal phases with spotting before my period started, which can indicate a hormonal issue. However, this was for the months in between a miscarriage and getting pregnant with my daughter. I had not previously experienced much spotting before starting my period. I do expect that a 10 day luteal phase is more or less normal for me though.

I didn’t get my period back until nearly 16 months postpartum, and only after much cutting down on breastfeeding. I make the supposition that the inefficient sucking, as well as the numerous night time feeds,  delayed it’s return because sucking stimulation releases the oxytocin which inhibits menstruation.

Oh, then there were the array of potential medical issues. I lost 600ml of blood, which is within normal for a C-section, but if I recall correctly over 500ml can cause issues in some people. I had an emergency c-section. I was overhydrated both before and after birth because of my blood pressure being so low (to the point of breast edema, though it didn’t delay my milk, which came in, such as it was, on day 3). I had low platelets. Not dangerously low, but enough to be mildly alarming. I had been taking iron pills in my second and third trimester, but had run out early in my third trimester and my midwives didn’t think to give me more. So I could have been anemic.

What might have been

I’ve had some passing retrospective…introspective? Something ‘spective at any rate, moments of late of what might have been. Wondering what kind of person I would have been if we’d not had these issues. It kind of makes me afraid. I wonder if I would have been as inflexible and uncompromising as I see some people be on the subject of breastfeeding issues. Part of me doesn’t think so though since I am prone to compassion. I certainly wouldn’t have the ability to empathize quite as strongly as I do now. I think it takes staring choices you never thought you’d have to make in the face to really get some things. I do know that our problems have made me a better, and certainly more complex, person though. I’m certainly more thoughtful about how other peoples struggles are not my own.  I read somewhere recently that exceptional people consider others just as able as they are if not more so. That people who have succeeded consider others more able than they are. And that really hit home for me. Because I have often wondered, why me? Both as to why this happened and to how and why I got through it.

I never really considered myself that out of the ordinary in terms of our struggles. I mean, unusual to be having them, I suppose, but once I got into dealing with things I certainly didn’t feel extraordinary in any way-except that I was alone with my struggles. People in similar situations to me either met their original goal or went a different way. There was no one else who was defining alternate goals on the fly and making those work.  I guess that I consider myself mostly lucky despite not having any help. Lucky that I stumbled on the fact that the SNS existed (and found somewhere to buy one), lucky that my baby latched on,  lucky that my baby tolerated the SNS, lucky that being told over and over again that I couldn’t do this made me mad instead of stop.

I certainly understand communities of women who have faced breastfeeding difficulties (the Fearless Formula Feeder community springs to mind) being fiercely defiant over their eventual choice and outcome. Finding solidarity over what ended up being best for them and being proud that they are better people for their struggles. I feel the same way although my choice was different, and thus more isolating, than most. Most every community I’ve found is either banded together over something I only share peripherally (which has made me an object of suspicion), or a collection of people bound together over their isolation. Which doesn’t exactly make for much of a community…

I’ve talked to a lot of people experiencing issues with breastfeeding. I’ve referred those who asked to what I did that worked, to the support I’ve found along the way and of those one has taken my advice on support networks (MOBI), and none have found my experience or advice particularly helpful. I suppose it was faulty of me to assume that just because I would have loved some support from someone like me that anyone else would be grateful for advice from someone who’d been there, done that and made it work for them. Which leaves me wondering, why me? Previous to these experiences I would not have thought this would have been something I was capable of.

A big part of becoming happy with how things are (other than time, which heals most wounds) is extracting myself from negative influences. Without people telling me that even though I was doing something tricky with little to no guidance that I was ‘actually’ failing by their definition, or alternately that I should stop doing something that was working for me in order to make my life easier caused me no end of heartache. Because I kept searching for somewhere to ‘fit’ I endured more pain than I needed.  And of course the eventual realization that I did do the right thing. Finally being able to look back and feel a tiny glimmer of pride at what I did do, whether or not it worked, or if it was what I’d planned. I did that. I helped grow that little person not through our struggles or what I fed her but through love and parenting. So no matter what I’m glad I’m not what I might have been because me, now, is better. My little toddler certainly has her priorities straight. What her baby-doll needs most are apparently kisses and hugs.

So this kind of means I don’t want to go looking for things to write about because there are some scary uncompromising people out there.

So with that I’m winding this thing down to the extent there won’t be bi-weekly, or maybe even weekly posts. Certainly for now, but who knows about later? How I’ve been operating lately is write a bunch when I have time and auto-schedule the lot. But I don’t have anything much scheduled. I have a few posts readied for various circumstances and occasions (watch this space for a tutorial on making milk jewelry), but nothing regular. I might even start publishing my previously mentioned journal on a semi-regular basis. And if I see or think of something I may, or may not, feel motivated to write something up, but not going to be making the effort to be weekly, or potentially even monthly.

Or I could add a parenting subsection and go on about that…

Being better at baby friendly.

When I was pregnant I was pleased to learn that every hospital and maternity centre within reach was baby friendly. By that I mean BFHI accredited. I was pretty set on breastfeeding and I’d heard too many tales from acquaintances in the US and elsewhere who had had to fend off staff with bottles of formula, or who’d had bottles given to their babies as a matter of course. The way New Zealand implemented the BFHI has been of some interest. The number of BFHI hospitals here is much higher than in similar OECD countries. New Zealand has 72 as of 2010, or over 90% of it’s maternity hospitals, where the US has 119 , which is less than 5%, and the UK has around 52, or less than 20% of it’s hospitals.  Small country advantage, clearly.

Here’s what the BFHI is:

  1. Have a written breastfeeding policy that is routinely communicated to all health care staff.
  2. Train all health care staff in skills necessary to implement this policy.
  3. Inform all pregnant women about the benefits and management of breastfeeding.
  4. Help mothers initiate breastfeeding within one half-hour of birth.
  5. Show mothers how to breastfeed and maintain lactation, even if they should be separated from their infants.
  6. Give newborn infants no food or drink other than breast milk, not even sips of water, unless medically indicated. (this is for staff)
  7. Practice rooming in – that is, allow mothers and infants to remain together 24 hours a day.
  8. Encourage breastfeeding on demand.
  9. Give no artificial teats or pacifiers (also called dummies or soothers) to breastfeeding infants. (this is for staff)
  10. Foster the establishment of breastfeeding support groups and refer mothers to them on discharge from the hospital or clinic.

The program also restricts use by the hospital of free formula or other infant care aides provided by formula companies. (Definition shamelessly stolen from wikipedia)

That’s all really. Now, of those 10 steps I can say I personally experienced 6,7,8 and 9. I probably would have seen 4 as well if I hadn’t been groggily recovering from my (non general anaesthesia) emergency c-section. When I was aware I wasn’t in the operating theatre and able to ask for my baby she was handed to me and I was helped.  I was also summarily helped most (but not all) of the other times I asked for help during my stay. So halvsies on number 5 then because no one ever showed me how to pump. I was also given a cartload of flyers so I guess that’s the effort for number 10 there as well. So 4 fully out of 10, with an additional 2 tacked on the end and one which probably would have been done had circumstances permitted.  The other 3, 2 really aren’t about me, they are about staff, and the third wasn’t an issue as I was already intending to breastfeed.

Why I think the BFHI is a good thing:

Those first days are important to teaching the baby how to suck from the breast appropriately. Giving bottles or soother devices when not medically indicated can cause issues like flow preference and nipple confusion which can be a challenge to overcome. I think if women do want to breastfeed they shouldn’t have to worry about what the staff are getting up to in terms of accidental sabotage.

In addition, the first few hours are regarded as critical for longer term breastfeeding success.

It does increase breastfeeding longer term rates. No question, there are many countries with success stories. If you don’t want to breastfeed you are able to bring your own feeding materials, and if you change your mind you are often not in hospital for very long. Our usual stay here is 48 hours for normal vaginal deliveries and 96 for caesarean. Complications like excess blood loss or surgical vaginal deliveries merit additional time. If you don’t want to breastfeed or suspect potential complications I’d urge anyone to get a copy of the hospital’s written infant feeding policy. Actually, probably it should be required reading for anyone giving birth, but that’s probably above and beyond what most people are interested in doing in terms of informing themselves. After all if they are BFHI they have to have one that they give to staff.

Where I think the BFHI needs work:

  • The quota system: Part of the BFHI is that to maintain the BFHI designation (and often the extra funding that goes along with it) BFH institutions must have at least a 75% breastfeeding initiation (discharge?) rate. This effectively turns front line staff into sales people selling breastfeeding to mothers to keep their institution’s funding. Can sales and support really be the same thing? I’d kind of think if you implemented the rest of the guidelines sensibly that the increased breastfeeding rates would follow without any uncompromising push from staff. Many people do actually want to breast feed. Really. But if they don’t, it’s less energy all around to just leave it. Give more flexible limits (apply the ‘quotas’ to only healthy singleton term infants, or have different quotas for mothers and infants at risk of lactation failure) to hospitals dealing in more complex cases.
  • Points 1 and 2. The staff training, which is where the implementation of the BFHI can go awry, needs better minimums or at least better standards. What goes into that staff training exactly? Is the training the same kind of overzealous lactivism that is used on women to push breastfeeding or is it something more along these lines? I find some of these scripts useful and some of them pretty objectionable.  Right now the minimum staff training for BFHI accreditation for nurses and midwives is 18 hours (I’m not clear if this is yearly or once ever), and for non nursing staff, so obstetricians, pediatricians and similar, is 3 hours (this is per year). The article referred to above (here it is again) outlines a lot of the issues with getting and keeping everyone trained. No wonder then that the result of the training seems to often turn front line care providers into walking breast is best posters. Which, you know, I’ve never seen? I did see a lot of breastfeeding posters at my various stays, but they were about gauging infant hunger cues, appropriate bodily output for the breastfed infant, signs of dehydration, and latching technique. So, more helpful things instead of useless platitudes.

I think this is the most telling quote from the article:

…specific resources and training may need to be provided for birthing centres that deal with complex cases where exclusive breastfeeding may be less likely to be achieved.

  • Point 3.  Misinterpretation of the guidelines. This is such a recognized issue I found a PubMed article about it. Being baby friendly does not disallow use of formula or information about formula. There are two main goals, one of which is to stop the free and low cost formula from being marketed to hospitals. The other is to protect breastfeeding by following the 10 steps for accreditation.  Because of the tie to certain numbers of breast feeding rates that I outlined in my first objection the guidelines are often exploited by staff.
I guess what I’m asking is if the education of front line staff  is adequate to have women’s experiences be more positive. I don’t think it is.  More interestingly, what goes on in those 3-18 hours of staff training? Is is a seminar with dire warnings about breast being best or is it something more informative, like infant stomach size marbles and spotting potential issues?
I’d imagine the 15 hour training time difference for primary support staff does have some more practical help with latching and positioning. But what about informing mothers they are at risk of lactation issues? Those with high blood losses, C-sections and similar? Gosh, what about tongue tie or IGT screening while we’re wishing? I think they must have some leanings toward that here as I had a lactation log card I was given to be filled out for feeding times and durations. I saw the writing on mine and though I dutifully filled it out my milk status was written on there for various days without having consulted me at all (colostrum, filling and full when full didn’t ever really happen). So even in fully compliant institutions there is some data fudging to get people out the door.
So, what should front line staff be taught?