Breastfeeding with Hypoplasia

Today, on the San Diego Breastfeeding Center blog, I'm honored to share Fakiha Khan's 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, Fakiha, for sharing your story with us!  It's stories like yours that make me want to be the best mom I can be! 

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When my son was born 2 and 1/2 years ago, I wanted nothing more than to be able to breastfeed him.  He was in the NICU for a week after he was born, and I really did not get to nurse him until he was a week old.  By that point, he had trouble latching on, and my milk just was not coming in.  For the next five weeks, I did what I could.  I tried to nurse him every hour and a half, I pumped, I took herbs, and I finally went to see a lactation consultant. 

I will never forget how shocked she was that my son transferred only 1/2 an ounce at the age of five weeks.  Other than telling me to continue pumping with a hospital grade pump, the consultant had no other ideas of why I was not producing milk.  She kept saying to me - it is the most natural thing to produce milk.  It's all about demand and supply.  If you keep putting him on your breast, the milk will come. Well, I kept trying, and after weeks of emotional torture and physical discomfort, I finally gave up.  I was producing an ounce of milk from both breasts at that point.  And, giving up was not easy.  I felt like a complete failure, like I could not do the thing that is supposed to be so natural. 

I got a second chance when my daughter was born two months ago.  I figured that, with my son, I just didn't get started on nursing quickly enough.  This time, I decided to be proactive even before the baby was born.  I talked to people and a lactation consultant prior to giving birth.  This consultant suggested that I might have a physiological problem such as hypoplasia, but I would not know until I got checked out.  I didn't get a chance to do so before I gave birth, but I went into the birth with hope of doing better this time. 

When the baby was born, I immediately put her on my chest and I nursed her within a half hour of birth; I kept her with me nonstop, nursing her whenever I could.  But, within the first two days, it was clear that I was not even making enough colostrum.  I had to give her some formula.  My fuller colostrum finally came in at day 3 and the milk first came in on day 5.  But, despite nursing every hour and a half, the baby was still fussing and clearly unsatisfied. 

Those old feelings of frustration and failure came rushing back to me.  I kept thinking, this is supposed to be so natural.  Every mammal mother makes milk for her child, yet, I can't feed my baby who is trying so hard to get out a few drops of milk from me.  All of the instructions from the breastfeeding class kept repeating in my head.  I kept thinking, maybe today I will suddenly make the milk my baby needs, maybe today.   

Before giving up, I went to see my doctor to find out if I had hypoplasia.  The doctor told me that hypoplasia was not possible, as I did not have the physical signs (tubular breasts that are set far apart) and because I was making some milk even if it was only an ounce at a time.  So, I thought, ok, there has to be something I can do.  So, I did some research and found out about fenugreek.  I began taking that, and immediately I got a boost in my milk supply.  But, then within a week, it started going back down again.  At this point, I was ready to scream, but before giving up, I decided to consult another lactation consultant.

As it happened to be, this consultant specialized in low milk supply.  She finally told me what I had been suspecting - I have insufficient glandular tissue.  The consultant suggested a number of herbs and medication, all of which I tried.  Again, my milk supply went up very quickly, but now after 3 weeks, I see it going back down again.  I still don't know if any of the medications or herbs (which I understand work by increasing hormone levels) really work with insufficient glandular tissue.  Can they create tissue where none exists?  No one can seem to answer this question for me. 

Now, I continue pumping during the day, saving the little bit of milk I made (about an ounce and half), and mixing it with formula.  I nurse when I can and regularly throughout the night.  But, I have resolved myself to the fact that I will not be able to exclusively rely on breast milk.  It's a very sad realization, and I wish I had a solution, something to fix this problem, or even a bit more information.  Alas, I do the only thing I can and, in the process, laugh at myself when I am proudly toting home the four-ounces of breast milk I take home after pumping 3 to 4 times at work.  To a regular breastfeeding mom, four ounces is probably how much she produces in one feeding.  For me, it's a day-long effort, and at the end of the day, I carry it home with the same pride as if I had just discovered gold!

I Never Knew I Had Insufficient Glandular Tissue

Today, on the San Diego Breastfeeding Center blog, I'm honored to share Jennifer Thomson's 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, Jennifer, for sharing your story with us!  I know that your words and wisdom will provide endless support to other breastfeeding moms!

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When I went for my first prenatal check up, the midwife asked me if I intended to breastfeed. I immediately replied, “I’m really looking forward to it!” Those words have haunted me for years.

My first child and I had a rocky start to breastfeeding. After her traumatic birth at almost 35 weeks, I didn’t even see her for over 15 hours and she was too weak to breastfeed in earnest for the first couple of weeks. I was so in shock after my bout of preeclampsia and sudden C-section, I nearly forgot about breastfeeding entirely until a nurse wheeled in a pump and said I’d better get started. I never got engorged, and could only pump 3-10 mls of colostrum and then milk, not that I could tell when it had “come in” other than a change in color. I dutifully pumped what I could for my little 4 pound preemie, and the nurses in the NICU were very supportive and would hold my tiny syringes of milk until I got there each morning so that I could witness a gavage feed of only breastmilk once a day. It was something, and it did make me feel a bit better.

Living in an area that has no shortage of lactation specialists and breastfeeding support, I did everything they said and nothing seemed to make a difference. Several weeks in, my mom asked one of them when I was going to get engorged. The lactation specialist responded that she didn’t expect that I ever would. No one ever mentioned why. I was so confused – everything I ever read or could find said anyone who wants to breastfeed can and should. Most people had problems with latch, or engorgement, or blisters, not an absence of milk. I blamed the C-section, the early arrival of my daughter, the traumatic birth experience, the fact that she was in the NICU for three weeks, the medicine they pumped into me for the 5 days following her birth. But the truth is I knew that there was something wrong with me and my breasts. If I went too long between pumping sessions, I would leak and could feel engorgement in some areas of my breasts. Why could I feel individual ducts, and why weren’t they everywhere?

After a few weeks I ended up on Reglan, which helped a bit, but made me depressed and I didn’t need any help in that department. Several lactation consultants vaguely mentioned Domperidone, so I started my own research and ordered some from New Zealand. It worked, at least somewhat. I was able to pump an ounce from each breast every 4 hours and I nursed my daughter as much as she was willing. By the time she was 3 months old, I grew tired of wrestling with her at the breast. She didn’t want to nurse unless it was the middle of the night. I found myself getting so angry with her denial of me that I needed to stop trying to force her to breastfeed in order to save my own sanity. She preferred the bottle, and that was that. So, I pumped and gave her 2 ounces of breastmilk followed by 4 ounces of formula until she was 8 ½ months old and I just couldn’t do it anymore.

I kept a two week supply of Domperidone on hand in case I needed it one day for another baby, wishing and hoping all the while that maybe I was normal but it was the circumstances that caused my low milk supply. Two years later I was pregnant again, but this time I was under the care of a perinatologist from the beginning, did not develop preeclampsia, and was able to carry my second daughter to 38 weeks. I did have another C-section, but this time I was prepared, awake during the surgery, and was in my room breastfeeding 45 minutes after my full-term baby was born. What a difference! She had great latch from the first try and was happy as a clam nursing for hours on end. I wasn’t engorged, but my baby seemed content and I could tell when my milk came in. But she started to lose weight, and fast. She nursed around the clock, but didn’t seem content once she was a few days old. I went to see the lactation consultants at the hospital where I delivered, and they told me I had to give her a supplement at that point. This is a big deal since this is a breastfeeding-friendly hospital, so they have to buy formula for cases such as mine. She filled a syringe with formula, attached a tube to it and taught me how to have her latch around my nipple and the tube and to gently push it in as she sucked. I didn’t even need to – she sucked so hard she got the formula herself. She looked relieved as she drank and promptly fell asleep, satiated at last. I was crushed.

So, by day 5, I was back on Domperidone. It worked again in combination of around the clock nursing and pumping, and by the time she was 8 weeks old she started to refuse the bottle. I was forcing it on her like I had tried to force my first child to breastfeed. I was so worried that she wasn’t getting enough food that it didn’t occur to me that she might actually be getting enough breastmilk until a friend pointed out that it was possible. I stopped bottlefeeding, and she stayed happy and growing. I couldn’t believe it. By the next growth spurt, though, I couldn’t quite keep up so I started giving her 3-4 ounces of formula at bedtime. That did the trick, and I still felt pretty good about the whole thing.

I took Domperidone for a full 12 months. I was shocked to find that at her first birthday my supply was as high as it had ever been and my daughter was still happily breastfeeding around the clock. I don’t think I ever had much more than an ounce or two in my breasts at a time, but it was enough. The biggest difference was that because we started out strong, even with an SNS supplement, she always preferred breastfeeding. My supply dwindled over the next year, without the Domperidone and as nursing became less and less frequent. By her second birthday, I noticed she wasn’t swallowing at the breast anymore and there were only drops coming out. She didn’t care. These two things on my chest that I had deemed useless countless times were hers and she loved them. She still breastfed just as often even though nothing came out. She still breastfed to go to snuggle, to calm down and reset her day. She still demanded to nurse before bed and upon waking in the morning. Somehow, through all the trauma of my breastfeeding experience, she was just like any other breastfed child. It’s been three months since I dried up, and she still asks to nurse a couple of times a day. We did it, together.

Today is the first day I have ever heard the term “insufficient glandular tissue”… there is a name for this? I asked around to see if it was common to be missing what I called “breast tissue” and I never really found an answer anywhere. I am relieved to hear that I am not alone. That being said, I am so thankful for the support I did receive from my perinatologist, my obstetrician, countless lactation consultants, my primary care physician, my cardiologist, the hospital where I delivered, my husband, my friends, Dr. Jack Newman, the New Zealand pharmacy, the local compounding pharmacy, and the area where I live that has lactation rooms all over the place. I want to share my story so that other women in this predicament know that they aren’t alone, that they can have a breastfeeding relationship with their child even if they aren’t making enough milk. One lactation consultant told me once that I was breastfeeding, no matter how much I needed to supplement. It seemed at first like a silly thing to say. But it stuck with me. You are breastfeeding and your child is breastfed if they are receiving a drop of breastmilk. Just ask my two year old, who still thinks my empty breasts belong to her.

Jennifer Thomson

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