Tuesday, June 2, 2015

Mammary Hypoplasia: My Milkless Journey of Breastfeeding

I'm sharing this story today because educating women and men about Mammary Hypoplasia; it is something that I've grown passionate about, this condition is not well studied and way too many health providers don't know about it at all. I met a woman this week who was still in tears a year and a half after her baby was born over the shame and embarrassment of not making any milk -- I want to connect with mamas with similar stories so we can share, heal, and empower each other. Mostly I want to educate anyone who works in the health care industry, especially those who work with pregnant women and new mamas about this condition.

Felix with his bottle at...hmm 6 months old? Its hard to tell, they really do grow so fast!

Every Mom or Mommy-to-Be I've ever met has had the desire to breastfeed. 
Yes, there are the few who are a little weirded out by the thought of breastfeeding -- but I find that that usually changes by the time they actually get pregnant or they are pushed into a breastfeeding class by their OB. 
I don't think I need to touch on the benefits of breastfeeding -- because they are pounded down the throats of society. Not to say that they don't have a good reason to do so, but they pound none-the-less. This results in formula feeding being an unacceptable choice, as if it were poison. And yes, I've actually heard someone call it poison. For a while I actually believed that it were.

When I was pregnant I never once imagined myself not being able to breastfeed. I judged bottle feeding moms because of their feeding choices. I read the books, bought the pillows, bought the accessories, bought the breastfeeding bras and shirts -- because it was all supposed to be so easy. "Every Mom can breastfeed" they say. And if you don't have enough milk they tell you it's an illusion and that you just need to try harder. Drink more beer (or don't depending on who you talk to), eat more lactation cookies, pump every hour, take the herbs, nurse every hour on the hour. Don't you dare go near a bottle, or a pacifier, or FORMULA. Don't even say the F(formula) word. 

When I woke up from my dazed and confused, super traumatic birth, the lactation consultant took one look at my breasts and said "I think we're going to have a problem." After all that I had been through the previous night, being pumped with so much pitocin to control my hemorrhage that my legs swelled and looked like sausages, and now while I was receiving my first blood transfusion, she drops that bomb. Her words stung. What happened to "every mom can breastfeed"? Even though I had read all the books, studied all the positions, and prepared myself as best I could, I didn't read that chapter on "complications with breastfeeding" -- because my 23 year old, healthy body shouldn't have any issues with breastfeeding. That first lactation consultant asked me two very important questions: 
"Did your breasts grow when you were pregnant?"
"Did your breasts grow during puberty?" 
I answered both with a, NO.

My lack of chest has been a source of many laughs over the years. I mean, it really is funny. I wear my Itty-Bitty-Titty-Committee label with pride. There's NOTHING, nothing to even push up with one of those fancy Victoria Secret bras. I had made peace that they were never going to exist many years ago -- and to be honest I think I got the better end of the deal. No sagging, no back pain, no shirt stretching out, no stretch marks, I can run with no trouble (not that I choose to run that often LOL), and I can wear shirt without worrying about cleavage...it's really not that bad. I did look forward to pregnancy boosting them a bit, but that didn't quite happen either! Because of the "every woman can breastfeed" mantra I never thought that it would indicate a problem with nursing. And neither did any of the many OB's and midwives I saw during my pregnancy. In all of the classes we took on parenting, childbirth, and nursing I never ONCE had a warning that this could happen. 

The first few days at home were hard. The first lactation consultant showed me how to latch on and off, she never said anything beyond asking those two questions, so I thought we would be fine. Felix was restless, his weight was dropping and he just didn't seem to be getting anything from me when he nursed. The trauma that I had experienced made them worry my milk would take a while to come in, but not quite this long. I was sent home with a hospital grade pump, and instructed to pump every hour. I started taking Fenugreek and Goats Rue religiously, I drank gallons of water to help clear the pitocin out of my system, I ate oats and all the other lactation foods. Felix was trying so hard to get milk from me that I had bleeding blisters. Nursing was painful, exhausting, and (literally) sucked the life out of me. He continued to drop weight. I still remember the embarrassment when the lactation nurse handed me a bottle of formula to feed Felix, the shame and guilt of my failing breasts. I was to start the SNS nursing system, which would last "only a week" until my milk came in and then we would all get back to our regularly scheduled programming. 

If you're wondering what an SNS looks like, heres an example:
And for the record, Seth and I had it down to a science. My lactation consultant was seriously impressed when she saw how fast we could set it up and get him latched #skills

And even with all of those measures I took, the milk never came. When Felix got his first formula feeding, he slept so soundly that I thought he was dead -- it turns out it was the first actual feeding he had ever had, he was so full and satisfied that he could finally rest.

When I pumped I never got more than an ounce. Babies take between 2-6 ounces for one feeding, and I couldn't even produce a single ounce between both breasts. 

Over the next few weeks Felix became more and more dependent on formula. We pressed on with the nursing, we tried to take out the SNS for one feeding here and there -- but he just screamed until we gave him formula. 

When he was one month old we decided that we had had enough of the heartache of trying to breastfeed. I was still pumping through the night and all day long -- while taking care of a newborn, mixing whatever breastmilk I made with the formula into the syringes. I smelled heavily of maple syrup from all the fenugreek running through my system. I was tired. I was feeling more and more like a failure every day, while Felix was thriving and gaining weight with formula. When I think of those first few weeks in hindsight I was more like superwoman than a failure. 

For those of you wondering if we attempted to get donated milk from a milk bank, we did. My insurance would only cover the cost if our baby was in the NICU, which he wasn't. The cost of milk from the milk bank was $4 an OUNCE. Just let that sink in. If babies eat between 20-35 ounces a day, just do the math! Donated milk was not an option because of the huge financial burden. 

In my spare time I scoured the internet for women who had similar problems. I remembered those two questions the first consultant asked me, and used that to launch my research. Research indicates that there are a few things that lead to lack of milk production, many of them have to do with needing to eat more and drink more. There was some research done on women who had traumatic births and how long it took for their milk to come in, but even at that point 2-3 weeks is a LONG time. Then I came across a complex condition with many names. Most of the time it's called Mammary Hypoplasia, it also known as Insufficient Glandular Tissue IGT, Micromastia, or Primary Lactation Failure. 

The names explain exactly what it is: lack of breast tissue or milk factories (that term makes me LOL). IGT can be deceiving because many women have normal sized breasts, but it turns out that it is primarily fat cells rather than milk producing cells. I just didn't have either so it was easy to recognize. There are a few common characteristics of hypoplastic breasts: widely spaced (more than 1.5 inches apart) this is my most obvious characteristic, asymmetry, stretch marks in absence of growth, tubular shape, and absence of breast changes in pregnancy, postpartum, or puberty. I definitely didn't fit the entire list, but I knew in my heart that this is what it was. At my six week postpartum check, the midwife confirmed that this was indeed what I had. This diagnosis coupled with my severe loss of blood made breastfeeding a pipe dream. 

Many women with IGT choose to get breast implants or augmentations, but that does not solve the lack of actual breast tissue problem. Many women also develop IGT if they have had a breast reduction, it would be interesting to find out if they warn women of that before having a reduction procedure. 

There is a small possibility of me producing more milk with my next child. They say that breast tissue increases with each pregnancy, but I highly doubt it would increase enough to feed a growing baby. There are also drugs I could take before I deliver, and after to help aid the production of milk. I've toyed with the idea of trying those too. Now that I am educated about bottle feeding and have raised one healthy child on formula, I'm just not sure if I want to go through the whole ordeal again. Raising a newborn is hard enough with everything else going on! Formula feeding is a perfectly healthy, acceptable, and good way to feed a baby. No one is ever going to convince me of anything different. I mean, have you seen how awesome Felix turned out?! 

I don't share my story because I want pity, or sympathy, or attention -- I share it because I want to educate people who don't know about IGT, and empower and give a big fat hug to the women who tried so desperately to breastfeed but couldn't. As a mom who formula fed her child, I experienced so much judgement -- and most of it came from health professionals. I was astounded that there are tons of health professionals who deal with new moms and babies that don't know about IGT -- the doctors who primarily know about IGT are plastic surgeons (go figure).  

Every time I'm in the presence of someone who works with breastfeeding moms, or in a hospital setting with new moms, I try to share a piece of my experience. In a perfect world, pregnant women would be encouraged to feed their babies however they see fit -- and if they choose to use bottles and formula they should receive the same amount of encouragement. We should be educating women about the huge hurdles of breastfeeding -- lack of milk isn't the only hurdle. Because, the shaming must stop and the education MUST begin. Sure, breast could be best. In my case, if I would have just continued to nurse Felix and refused to supplement with formula ( like MANY people will suggest), he could have died or gone severely malnourished.

I'll never forget calling a nurse line for help with Felix's reflux and I was told by a nurse, "Well if you just would breastfeed your baby you wouldn't have this issue." 
No one should ever say that to a new mom. No new mom should ever have to hear that. 

A lot of people will have a different experience with the formula vs. breastfeeding debate, and I honestly think it has so much to do with region and culture. Some people don't have to deal with the rude comments over their choice to bottle feed, but in both California and Oregon I have experienced the same culture that heavily judges moms who feed their babies formula. Some women also have the magical ability to stay unaffected by the negative commentary -- I am not one of those people, and I know for a fact that most new moms aren't either. 

Mamas, keep on feeding your babies. Dad's, support your wife in however she chooses to feed that precious little nugget. Mama's struggling to breastfeed, SHARE YOUR STORY. If you think you might have IGT ask your practitioner, and if they haven't heard of it, have them ask around so you can find a doctor that knows about it and can diagnose it. Getting the diagnosis lifted a huge weight off of my shoulders. Healthcare professionals, stop telling us that "every mom can breastfeed". It's a lie that produces so much shame for the women who can't, and it makes it all sound so easy. We should NEVER feel shame for feeding our children. 

To the Mama who's reading this after tirelessly searching Dr. Google for answers about her hungry baby and her empty breasts, I hope you know that you are not alone in your struggle. There is no reason to feel ashamed about your choice to formula feed your baby. Try for as long as you have the energy and heart for -- but at the end of the day if your baby is FED, you should be patting yourself on the back. 

Formula feeding was a godsend for more than just the reason of nourishing my child. Seth and I were able to enjoy date nights because caregivers could feed him while we were away. Bottles allowed for Seth being able to take some feedings at night or when I needed to run errands. We were also able to feed him while driving (hard to breastfeed a baby in a carseat), and in other places where breastfeeding isn't exactly convenient. And Felix slept through the night at an early age, which many people attribute to formula because it keeps their bellies full longer. I don't know about you, but I'm a big fan of sleeping. 

 Thanks for sticking through this entire post. I hope in the future that we can end the debate on how we feed our babies. Us mamas need each other, there is no reason to create a separation because of how we choose to nourish our children. Feel free to share this post with a mama who is struggling with breastfeeding or just to educate others on a condition that isn't talked enough about. 

Let us all be kind to each other on this adventure of motherhood!