My Battle with Insufficient Glandular Tissue

Today, on the San Diego Breastfeeding Center blog, I'm honored to share Nikki Williams' memoir about her battle with Insufficient Glandular Tissue.  If you would like to submit your story as well, please email me at robinkaplan@sdbfc.com.  Thank you so much, Nikki, for sharing your story with us!  You are an incredibly dedicated mom and a true breastfeeding warrior!

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When I developed in puberty my breasts were never perky and upright; even at 16 they were pendulous and looked like they had already nursed a dozen kids, even though I am relatively slim, and the shape wasn't inherited because my mother had no breasts to speak of (I was not breastfed in part because my mother believed she would make no milk because she was barely an AA cup.)  They have always been a source of embarrassment for me, but I resisted getting a breast lift and areola reduction because I wanted very much to breastfeed and I knew that could cause problems.  To add insult to injury, my breasts are also fibrocystic, meaning they are lumpy all the time and burn and throb in the week before my period starts. 

In June 2008, my breasts were burning and swelling as they usually do before my period, but my period never came- I was pregnant, but it took me seven weeks to figure it out.  Throughout my pregnancy, I was able to fit into the same bras- the only breast changes I noticed were dark, peeling nipples.  I checked my bra every day for signs of colostrum, but it never came.  My water broke and labor didn't start for a few days, so my midwives had me try to use a pump to induce contractions.  Nothing even came out in the several hours I pumped. 

Labor did eventually begin and I had a perfect, natural water birth ending with a beautiful, long, skinny daughter.  I really strived for a natural birth to maximize breastfeeding success, because I just had this deep feeling that something was wrong with my boobs.   Because my nipples are tiny and flat and my breasts lack fullness, the first latch didn't happen for several frustrating hours, but finally it happened and I just waited for my milk to come in.  My nipples were cracked and bleeding by 24 hours- my home nurse said my latch was great, my daughter was peeing and pooping meconium, everything was fine.  I got a prescription for Canadian Nipple Cream and a nipple shield to help shape my shapeless nipples.  

Day two and Day three:  No engorgement.  No yellow poops.  Baby was definitely a "nipper napper," so chilled out- never crying, always sleeping.  Nipples still agonizing.  Back to another LC, who checked for tongue ties and said everything was great, and that I could prod my daughter's rectum to remind her of that body part and that it has to do something.  I did, and nothing happened.  

Day five:  No feelings of letdown, no engorgement, no leaking...but some milk visible around my daughter's mouth.  I heard swallowing when she was awake to feed.  Still no bowel movements.  Red crystals in the diapers, which I started needing to change less frequently.  My nursing diary says I have spent 18 out of the last 24 hours nursing.  I cried with pain with each feeding.  

Day eight: We took her to get her professional photos taken, and she urinated all over the white fluffy beanbag she was posed on.  I'll never forget how dark and smelly that urine was.  But we were congratulated on no poop accidents in the studio!  

Day 11:  Something was wrong- my daughter had not pooped since the day of her birth.  She was so sleepy. I took her to the pediatrician, who weighed her.  She had lost a full pound from her birth weight.  She saw she was dehydrated and rushed out of the room to return with a case of formula.  I broke down.  I had been cruising kellymom.com while nursing (still 18 out of each 24 hours), trying block feeding, fenugreek, anything.  I was doing everything right.  The pediatrician said she didn't know what was with all of these new mothers who made such a big deal about breast milk.  I asked for a syringe or something because I was not going to feed her with that pre-mixed nipple-confuser bottle.  The doctor gave me a prescription for daily weight checks, an order to exclusively pump for 24 hours to see what I was producing, and a periodontal syringe that I could use to finger feed my daughter.  It was, and still is, the worst day of my life.  I exclusively pumped 20 minutes every 2 hours for 24 hours- I managed to collect 4 ounces.  

My daughter came alive on formula.  Her eyes opened for the first time in several days.  With her mouth moistened, my nipples were able to finally heal.  I was horrified that I had been starving my daughter while bragging to everyone how content she was.  That's something I'll never get over, as long as I live.  

In a daze, I went to visit my husband's cousin, who exclusively pumped for her son.  When she pumped, she had to use 8-oz bottles, which she would fill in 20 minutes.  I told her what was happening to me, and she mentioned she had a huge stash of breast milk in her freezer that she was about to throw away because her son was rejecting it in favor of formula.  I said I would take it.  It was several gallons' worth.  I cried and cried with relief.  During that visit, my daughter had her first bowel movement since her birth.  It was about 10 percent breast milk (2 weeks worth), then 90 percent hard nuggets of dark green formula, and she filled two diapers as I watched and rejoiced.  

That donated breast milk lasted me for two months.  In those two months, I had an appointment with an OB/GYN for an issue I had with my bladder during pregnancy.  During the exam, he asked me how motherhood was going, and I broke down right there with my legs in the stirrups. I told him about my nursing difficulties.  He stopped and asked if I would like him to have a look with the ultrasound machine.  I was confused, but a few minutes later he was giving me a breast ultrasound.  He said that he hadn't done this before, but he knew what a lactating breast should look like, and mine did not look like a lactating breast.  He pointed out that my glands were clustered all around my nipple, and where there should be glands and ducts radiating out and up into my armpits, I had only fat.  That would explain it.

I dug out my copy of The Breastfeeding Mother's Guide to Making More Milk and flipped to the section about insufficient glandular tissue, a section I had skipped over gleefully in my pregnancy.  There I was, there was my chest in a sketch.  I was redeemed!  It was really not my fault!  Now I was angry that I had been led to believe that I was not doing something right by the various LCs that I had visited with.  Why didn't any of them make me show them my whole chest?  Why didn't any of them touch my breasts?   Why didn't any of them ask me if my breasts had changed during pregnancy?  

Furious google searches and research dominated my life.  I had started to use a bottle by now because the 1-oz serving through the periodontal syringe was not working anymore.  My husband was able to feed her while I banged the keyboard.  Packages of domperidone began arriving from Fiji. I found the Medela SNS and obtained it from one of the LCs I had visited, annoyed that this hadn't been offered to me right away.  I was almost immediately more annoyed with the SNS, however, and more late night research led me to the Lact-Aid SNS, which was so expensive to me at the time that I rinsed and re-used the baggies. I dominated the refrigerator with frozen milk, thawing milk, tubes, bottles, bags.  The SNS affair lasted a few weeks at most.  I couldn't endure it.

It was all very annoying and demeaning at the time.  Twiddling with a SNS and searching for more donated breast milk via Milkshare consumed my life.  I don't remember my daughter's infancy until she was three months old, when I found a long-term donor and relaxed about finding donated breast milk.  She had a son exactly my daughter's age who was born through a traumatic cesarean, but she was struggling with oversupply.  Here we were, complete situational opposites, bonding over the same horrible postpartum feelings.  She ended up donating over 20 gallons of milk to me- enough for six ounces a day for a year.  

I found several other donors here and there through Milkshare and word of mouth, bringing my total to about 30 gallons of donated milk over a year.  That's actually not very much as far as a baby's consumption goes.  To bridge the gap between that and the four ounces of milk I was making per day, I began making the Weston A. Price homemade kefir formula. My daughter struggled on the store-bought formulas- another slap in the face for me.  Chronic constipation.  Poop that smelled like a steel mill.  Anal fissures.  Suffering. I couldn't find enough donated breast milk.  Many would-be donors saw my seemingly healthy, older baby and declined to donate to me, preferring a newborn or sick child instead.  Making the homemade formula was my meditation- I was still able to honestly say that I was making my daughter's food.  She flourished on the combination of me, my donating friends, and my homemade formula.  Finally I was able to relax and be her mom.    

Alas, now I had to go back to work.  Within a few weeks of returning to work, my period returned and my milk supply dropped.  I had a 50-mile commute one way, and I would pump with one hand on the wheel and the other on a flange, and after 20 minutes of zoning out on the Capital Beltway, I would look down and see only a few drops not even in the bottle, but still in the flange.   I was also bloated and 10 pounds heavier from domperidone, and almost $1000 lighter from that and the industrial-size bottles of goat's rue tincture, a better pump, and all the SNS doodads.  It wasn't worth it.  I stopped the galactogogues.  I quit pumping at work.  I didn't offer the breast to my daughter one day when she turned six months, and she never indicated she wanted to nurse again.  That was that.  No cabbage leaves required. Easiest weaning in history.

When my daughter was one year old, I became a doula.  I was inspired by the gal who gave me all that milk- her birth story was so hard to hear and I vowed that someday I'd help her heal the way she helped me- and I was indeed able to attend her homebirth after cesarean as her doula and friend.   Now I love helping other women overcome breastfeeding problems.  It is so ironic that I only breastfed exclusively for 11 days and for 6 months total, but I am one of the biggest supporters and champions of breastfeeding that I know.  I KNOW I know more about IGT and primary lactation failure than many lactation consultants, and that hurts me.  I would have never gotten a diagnosis of my condition if I hadn't happened to be in a room with an ultrasound machine one day. 

I am so pumped (no pun intended) to see the publicity and coverage that IGT is getting these days.  As of now, I won't be having another child in part because I do not want to go through lactation failure again, but if it does happen, I will be so prepared and I will be the poster child.  My only regret is stopping nursing altogether and not giving the SNS a better try, but I have to be gentle with myself considering it was the best I could do at the time.  And I think I did pretty darn good!  My daughter is healthy, athletic, graceful and still skinny and long, the way she was born and meant to be!

Nikki Williams