Do you have an experience with Insufficient Glandular Tissue? If you would like your story to appear on this page, please e-mail it to me at email@example.com.
From Kim, in October 2012:
I just found your website and let me just say how comforting it is to know
that so many women have had the same experience as me. I have three boys,
4.5, 2.5 and 5 weeks. I discovered my IGT after my first son was born.
Like many women who shared their stories, I have small breasts
(despite me being overweight), had little change in them during puberty,
and they did not change AT ALL when I became pregnant. My nipples were
tender during pregnancies but that was it. I also read every. single.
breastfeeding book available when I was pregnant with my first son.
I was so snooty about bottle feeding moms. I judged them. I could not
believe that someone would choose to bottle feed over breastfeeding.
Then, I was served a big 'ol slice of humble pie.
I breastfed my son as
soon as possible after he was born. About 2 days after he was born, he
furiously sucked and sucked and sucked. No swallowing noises. I remember
the fourth night after he was born, he was screaming bloody murder at
1:00AM and I couldn't figure out why. I finally gave him a bottle of
glucose water that the hospital gave us and he quiet as a church mouse.
We finally figured out that the poor child was starving. I sent my husband out at 3AM to get some formula.
After he finally got a decent feeding, he slept for a really. long. time. I saw a IBCLC the next day and
she had me breastfeed him before and after a feeding. The difference? 0.3oz. She looked at my breasts.
Small, wide spacing in between. We both connected the dots and determined that I probably had IGT. She
recommended Fenugreek, Reglan and a hospital grade pump. I did what I was told and pumped a whopping 1 oz
per pumping session, if I was lucky. Other times of the day, I could barely cover the bottom of the bottle.
At that point, I decided to save my sanity. I stopped taking the pills and took the pump back to the hospital.
I was a bottle feeding mom. It occurred to me that I may have wrongfully judged an IGT mom just a few weeks
before the birth of my son. Now, I know what it's like being judged. I am faced with "Are you breastfeeding?
You're not? Well, why?" And I had to explain myself over and over again after the birth of all three sons.
The "avid" breastfeeders are not always convinced that I did everything I could and when I tell them the
symptoms of IGT, they tell me that women with my defunct breasts can still breastfeed and how IGT is sooooo rare.
Well, I am the rarity. I know my body and I know I did all I could do to make it work. I wish I had known about
this but the books I read gave it little attention and it was never mentioned during my breasfeeding class.
I hope that my story can give another woman assurance that she did all she could for her baby and take solace in that.
From Larissa, in the Netherlands, in June 2012:
I gave birth to my daughter in January of 2010.
I had read every breastfeeding book there was, went to breastfeeding classes.
During my pregnancy, I didn't have any breast enlargement, though I "lactated" from 25-36 weeks. Then it stopped.
I asked my trainer of the pregnancy classes about it and she said not to worry:"everyone can breastfeed"
and she assured me my milk would come in after delivery.
At 41+3 days, I had a beautiful, relaxed, 12 hour, unmedicated birth.
Afterwards, my daughter latched on and 'nursed'. All seemed well. For the next hours,
we tried to sleep (my husband did, my daughter did, I did not).
In addition to IGT I also suffered from PPI (post partum insomnia, a rare condition where you can't fall asleep
after delivery, I didn't sleep for 8 days after delivery, then I went on much-needed sleep medication).
From the start, we had nurses trying with us to start the breastfeeding process and she was latching on perfectly.
She sucked perfectly. We went home and continued to latch her every 2-3 hours.
Then I noticed nothing was coming out of my breasts, not one drop.
Everyone assured me it was fine, she was sucking and drinking, ofcourse she was getting her milk!
But then my daughter would scream and scream, she was so hungry. I assured my husband she wasn't getting any milk.
He was doubtfull but we started formula on day 2. I felt like a failure. We fingerdripped it,
so she wouldn't be confused by the bottle. I was so determined to breastfeed!
We continued this tiresome process for 6 days, where I would nurse, she would latch on perfectly, suck hard,
and scream afterwards from being hungry, and then we'd feed her formula.
I pumped for days to try to bring on my production of breast milk, used Syntocinon
(an oxytocin medicin to jump-start breastmilk), nothing worked. We called the Dutch La Leche League,
talked to midwives, gynaecologists. Meanwhile, I still wasn't sleeping, and I got sicker and sicker every day.
By day 6 postpartum, our general doctor visited, examined me, and diagnosed me with endometritis, and inflammation of the
uterus. Because I didn't sleep, my immune system was low. We were just discussing the use of Domperdom
(domperidone in English I believe), but I was admitted to the hospital, and I chose to leave my daughter with my
husband (something the hospital staff was against, "it's bad for your baby's bonding"). By that time,
I couldn't even move, I was in so much pain, how could I take care of a baby? My husband became a father
for the 4th time with our child, she was going to be fine with him!
On the second night in the hospital, I finally got allowed to take some sleep medication and slept for the first 4
hours after delivery (mind you, that's 6 days after delivery!).
Looking back, I'm so lucky I didn't get PPD or a psychosis. In the hospital, I talked to more lactation experts
even though my daughter was already exclusively formula fed by that time, but none gave me the answer
as to why it didn't work. They just made me feel guilty, because "everybody can nurse". In the end, I just
gave up breastfeeding, I needed to get better myself, and my daughter was thriving on formula milk.
In the end, we had consulted 2 gynaecologists (including getting an ultrasound to check for
any placenta parts left behing in my uterus, as that was the only explanation I could find on not being able to breastfeed), 4 lactation nurses, 2 OB nurses, 3 midwives and our general doctor. NOBODY gave me any explanation as to why I couldn't breastfeed.
Now, 2 years later, I think I've found my answer, but I'm still unsure.
I have normally shaped, B breast, that are now somewhere between a A and B. They are beautfully shaped,
I loved them prior to giving birth. Im not sure if I have IGT but it's the ONLY explanation that fits right now.
From Elizabeth, in June 2011:
I was laughing in horror reading the stories on this page -- these experiences in so many ways mirrored my own. I too was very angered with the fact that my OB did not diagnose my condition nor was the condition or supply issues brought up during my breastfeeding class. When I told my OB about my condition and inquired as to why I was not diagnosed I was told there was no clinical diagnosis because it is not a pathological condition because it only interferes with breastfeeding. Really? That's not pathological enough? My baby would have starved to death before the invention of formula and that's not pathological enough?
Anyway, I too went through many of the same experiences from the start. The first night in the hospital my little girl would not stop crying so I sent her to the nursery. I nursed her the whole time I was in the hospital and she would sleep between feeding and was having dirty diapers so there did not seem to be any concern. Not until the second night when we tried to go home. She was sent for her hearing test and did not return until three hours later. By the time I got her home and tried to nurse her she was hysterical and would not latch. I finally broke down and gave her formula after it had been six hours and she had not eaten.
I continued nursing every two hours and was in extreme pain which I later learned was due to a level 4 posterior tongue tie. I was completely exhausted because she would not sleep at night unless someone held her and since we had little help and my husband insisted that his sleep was more important I was the only one up at night. I literally had only a few hours of accumulated sleep for the first five days. I became so weak and desperate for help for our "latch problem." Additionally, the doctor was on top of her now weight gain issue and I was bringing her in for weight checks every couple or few days. It wasn't until day 10 and my fourth lactation consultant and my daughter only gaining an ounce since her initial weight loss that I was finally diagnosed with IGT. She was very positive however and told me that I could gain a full supply and things would be "smooth sailing" in six weeks. After a couple of weeks of around the clock feedings and pumping with very little change I got angry at her for not telling me the possible reality of the situation and being led to believe that this was just a minor bump in the road.
In the meantime after sharing my diagnosis with family and friends I was repeatedly advised to "just give it up." I was completely heartbroken. I too, like many of the previous posters was extremely excited and dedicated to exclusively breastfeeding for a year and providing my baby with good nutrition. At about one month of age we both developed thrush and I decided to stop nursing and go strictly to pumping to hopefully keep us from transferring the thrush back and forth and get rid of it more quickly. I got cured quickly from difulcan but since she was on nystatin and did not respond I was told by the pedi to start nursing her again and she reinfected me. She finally was cured when she was finally given diflucan but then I was not responding to the diflucan anymore. It took me until she was 4 months old after I started seeing a kinesiologist to finally get rid of it a second time. By that time she didn't want to nurse and I was having a real hard time caring for her and pumping. It was all so overwhelming and stressful and my husband wasn't very supportive telling me I didn't really have thrush and she would never nurse again and to stop trying. I never stopped giving up though. I started to bring her in to bed with me because she started getting up every two hours at night again. This helped me get more sleep and helped with my milk supply. Of course my pedi was against this and could care less if it helped my milk supply. It took about a month or so but she finally started to nurse again during the day.
My supply has dropped because she is only getting up once at night to eat and give her a bottle a lot instead of nursing if I am out. However, I have started to power pump and this has proven and easy and quick way to boost my supply again. I became so obsessed with seeing how much milk I could provide my baby with that I created a lot of stress and missed time with her. I was able to get about 16oz. in the first couple of months but I now she is getting much less now. I just had to stop obsessing about and enjoy my baby before her babyhood was over. Also, I know most women don't read about this stuff or even seem to care but our bodies store a lot of toxins in our fat and when we breastfeed these toxins are released into our milk. Breastfeeding is considered the "ultimate detox" which is pretty scary when we're trying to give our babies the better nutrition compared to formula. Because of this firstborn children get the most toxins because mom system has been cleaned out by the time the second baby arrives. This knowledge is the only thing that gives me some condolence and makes me believe that her getting "half and half" half breast milk, half formula is really the best case scenario for her because our food and environment are so polluted right now that women cannot provide toxic free milk to their babies.
Thank you for reading my story. I want other women with this condition to know that they are not alone. I believe it is much more common than people realize and they should not judge when they see a baby being fed a bottle of formula at the zoo or the park. We are just doing the best we can.
From Jeanne, in June 2011:
I Did My Breast
My first daughter was born in 2006. I had minimal breast changes throughout the pregnancy, however was assured by my doctor that was okay and normal. I was producing colostrum months before my due date and that seemed to be fine.
I educated myself about BFing, and the potential challenges. I attended La Leche League meetings, and was all set to BF, and excited about it. Perhaps my small breasts may even grow!
Anyway, after a text-book birth, easy delivery with no complications and born on her due date, there were issues. She latched beautifully, however was always crying and hungry after a "feeding". There were no wet diapers and no sleep for either of us. But, I thought, this is just how it is being a first-time mom.
She had lost over 10% of her birthweight, and I was worried as were the public health nurses and doctors. Everything I read about BF discouraged supplementing, as it only lessened a supply and I was trying to build my supply.
I protested to the doctor that the growth and weight charts were for formula-fed babies, not breast-fed ones, which is why she was on the lower end of things. I remember so clearly having a breast feeding log and I nursed 45 min on my Left breast, then 45 on the right, then back to the left and then took a 20 min break to start all over again because she was supposed to be nursing 10-12 times per day. So, I did not sleep.
I took domperidone, fenugreek, blessed thistle, and drank gallons of water and ate as much as possible. Nothing helped really. I supplemented and felt mixed. She was finally content, gaining weight, and happy, but I was not able to provide that for her; a bottle was.
I felt I had failed. I used an electric breast pump, and felt complete defeat when NOTHING came out after 45 min of pumping (20 on the L, 25 on the R). I was miserable.
I used a SNS and that helped, but it was hard to go places and rig it up and act natural.
So, I nursed and bottle fed, and the LOOKS I would get, or feel I got, out in public, as if to say "Why aren't you breastfeeding?"
I sunk into bad post-partum depression. I was miserable. I rarely left the house. My partner was at a loss, and didn't blame me the way I blamed myself. I had a plan that we could minimize costs with a baby if I breast fed, and instead here we were buying formula, the soya kind because she couldn't tolerate cows milk.
But, after 3 or 4 months of hell, I said to myself, I don't care anymore. She is beautiful, healthy, and there is more to mothering than breastfeeding. I got out more. I took her swimming (I am a swimmer and swam all through the pregnancy). I took her to the library, play groups, and for walks. I just started being better to myself and her. I nursed when I could, usually when she needed to go to sleep, and that was fine.
Then, I had a second baby (after a miscarriage) in 2010. Same deal, at least I was prepared. I supplemented at the breast straight-away with a tube and then used my SNS when I got home.
I took crazy amounts of domperidone, fenugreek, blessed thistle, pumped, and called the BFing Guru, Dr. Jack Newman. He said I had done everything, and there was not any more to do. I was so happy. I knew I had, but to have that "social authority" acknowledge this was very empowering for me.
I sometimes feel the guilt for not being able to exclusively breast feed, but I did my "breast" and that is all I could do. My kids still love me, I am pretty sure ( : They will not fall behind in class because their classmates have higher IQ's because they were breast fed. I really think all the well-intended research on how much better breast fed kids are is harmful to those who were not, or could not, be breast fed. I am sure they won't compare mommies at the playground, only adults do dumb stuff like that!
There is so much, too much, pressure to breastfeed. Yes, it is best. But so is love, snuggling, and not being a stressed-out basket case as a mom.
I am into yoga, and a lot of what I am learning is about acceptance. I have moved from guilt and frustration toacceptance; I could produce some milk, and that was beneficial. I did try more than most moms did/ do. I am not a failure, I didn't give up, I am not lazy or any of those stupid labels society tries to pin on me because I didn't exclusively breastfeed. This transition from anger to acceptance has taken many years, and finding this site has helped.
This experience, most importantly, has taught me not to judge others. I don't know what anyone else has been through just by looking at them, and they don't know what I have been through.
So, being on the other side of this now, I strive to remind myself I did what I could, and am proud that I tried so hard. It says a lot about my ability to persevere, as many mothers on this forum have also done.
So, good for us all for trying! Perhaps the future challenges of mothering will not be so hard for us, as we already know a thing or two about accepting that some things are beyond our control. At least I am hoping this is some insurance for the teenage years ahead ( :
From Kelly, in June 2011:
My first child was born in July 2006, after an incredibly pukey but medically uneventful pregnancy. I had a very straightforward home birth, attended by midwives. I felt euphoric, and she happily latched on shortly after birth, and her latch was pronounced great. But over the next few days, she became increasingly fussy, with long hours of crying. My midwife said it was colic. She didn't weigh her; she said that she didn't see the point in the first week, because it just makes mothers anxious.
On day 5, we went to see a lactation consultant, not actually thinking that anything was wrong, but because the instructor at the prenatal class advised everyone to do so as a matter of course to make sure that breastfeeding was getting off to the right start. As it happened, the LC we went to is the most senior one in my city, the one who handles the really problematic cases.
Hearing about the baby's crying, and about things like minimal breast changes during pregnancy and a history of breastfeeding troubles in my family, the LC told me to lift my shirt. On seeing my breasts, she told me that I had IGT and was not going to be able to breastfeed my daughter. Maybe future children, but not this one. She really was that abrupt about it. She weighed my daughter, and she had lost 17% of her birthweight. She sent my husband out for formula immediately; if we didn't start giving her formula right away, she said, we were going to end up with her in hospital on an IV.
To say that I was devastated does not adequately represent my feelings. And not only was I devastated, I was also in shock. Sitting there, surrounded by posters about how every baby is born to breastfeed and the like, I was stunned that this could be possible. Everything I had read said that low milk supply was a myth of the mid-20th century and of formula propagandists. My own mother tried to breastfeed me and after two months was ordered to give me formula, but I had always assumed that was a case of not having enough support and information in overcoming problems. She did successfully breastfeed my younger sister, and my sister had had a great deal of difficulty building a milk supply when she had her first baby, but I took that as a sign that yes, if you just work hard enough at it, you can do it. My sister also had breasts that looked identical to mine, so the idea that the LC could tell by looking at me that I could not do what my sister had was also hard to believe. (My sister's breasts changed profoundly over the first six months of breastfeeding. We no longer look anything alike.)
Alas, the LC was right. I began supplementing, as she advised, with a tube at the breast. I started pumping every three hours too, so I was on an insane schedule where I would nurse, then nurse with tubes, then pump. I usually had about 20-30 minutes before the whole thing started up again. I also started taking domperidone, fenugreek, and blessed thistle. I later discovered goat's rue, which was the one thing that actually seemed to make a difference. My daughter still wasn't gaining weight appropriately, and so I had to start giving her bottles too. At six weeks, she refused to take a bottle anymore. Adamantly, vehemently, strenuously, loudly. From then on, it was tube at the breast only, but fortunately by then she could get enough from the tube to keep gaining weight. At about 2 months, I calculated that I was probably providing about 50% of what she needed. But her needs only increased, and my production had plateaued. After a few months, I started cutting back on the pumping, but I still pumped at least once a day until she was 11 months old. I nursed her with the tube until she was a whopping 27 months old (mainly because she was always good about going to bed, and I didn't want to mess with a routine that worked so well!).
My second child was born three years later. There were two miscarriages between my children, and I hoped that would help give me perspective on the breastfeeding failure, and to an extent it did. I also knew that I would not be able to breastfeed her exclusively, so there was no shock. It really did dredge up a lot of emotions, though. I had a plan and goals going in. My plan was to make sure her weight was carefully monitored and to begin supplementing as soon as it dropped to the 10% mark. My goal was to figure out the Lactaid system so I could nurse her anywhere and everywhere; with the first, I found the Lactaid too finicky, and used tubes in bottles, which worked well, but kept me housebound: feasible with a first-born, but not when I had a 3-year-old too! I began supplementing on day 3 when she had lost 10%, but her weight continued to be problematic. Whereas my first daughter screamed and screamed when things did not go well in the first few days, my second daughter became extremely lethargic. On her fifth night, I think it was, she slept through the night, and I had great difficulty rousing her to feed her when I woke up at 5 AM. My midwife had been pushing bottles instead of tube, and I was resisting, but I knew that when I could not wake a newborn, she needed more. (At the time of writing, she is 21 months old, and still nowhere close to sleeping through the night! Maybe that early experience made her wary of sustained sleep??) So I started supplementing with bottles. This made an immediate difference, and she regained her birthweight by about 2.5 or 3 weeks. Once she seemed to be gaining well, I started using the Lactaid, and she continued to do well. I also found that at night, I had enough milk to satisfy her. When she was a month or so old, my husband listened to her nursing in bed one night, and pointed out that he was hearing something he'd never heard before--a baby SWALLOWING at my breast, with any tubes or contraptions involved. At 4 months she was diagnosed with reflux and the only way I could manage to get the meds into her was mixed into formula or pumped milk in a bottle. She would tolerate an ounce or so, thank goodness, but otherwise, had a decided preference for the breast, and I was always able to make it through the night without formula. This felt like such an enormous accomplishment, and it also made life so much easier not to be fiddling with tubes and formula during the night.
I stopped supplementing not long after her first birthday--she's a very sturdy little thing and a good eater, so it did not feel necessary. She is extremely attached to breastfeeding, though, and at 21 months, is still nursing at bedtime and during the night. I find it ironic that I am once again nursing for longer than many friends who had no difficulties!
The experience has been extremely dismaying, and it is still, nearly five years after I learned that I cannot breastfeed my babies exclusively, an emotional topic for me. I feel anger at my body, and anger also at a mythology around breastfeeding that suggests that everyone can do it if they just work hard enough. I don't know anyone who worked harder than me, or spent more money trying to get breastfeeding to work (LC costs+hospital grade pump rental+an extraordinary array of herbs+various SNS systems--and then all the formula costs too!). I feel qualms about all the different herbs I took, wondering in hindsight if they were really safe, or safe in those quantities, and if in my demented quest for milk, I did any damage to my daughters or myself. I am extraordinarily susceptible to guilt/anxiety whenever I read about concerns about formula, about fluoridated water for babies, about BPA in plastic bottles (which I used as part of my homemade tube system for my first daughter until she was four months old, at which point BPA became a major issue in the media and I raced out to get glass bottles), and so on, and I also worry that my daughters have inherited my breasts. I'm not sure if I'll ever really come to terms with it, though perhaps when they are older and I am farther from it, it will be easier.
Update from Heather, in U.S.A., in May 2011 (first e-mailed in January 2011):
I just wanted to give you an update regarding my new baby! She was born on April 10th and the nursing staff was extremely gracious and understanding of my concerns. They provided me with lots of information and teaching and I had access to a very nice lactation consultant.
Fortunately, they helped me breastfeed successfully! YAY! I got home and successfully breastfed for a week. Unfortunately, I ran out of milk after a week... she was constantly hungry and I realized that I was running dry pretty quickly and I started getting sores and blisters because she was sucking on empty breasts.
I never did get truly engorged and never had that "let down" happen. So, I started giving formula. I'm OK with it, though.
I didn't expect to be able to do it at all.
I just want to tell all the new moms out there with this problem that
every baby truly is different and the atmosphere in which you learn
is very important to your success. This time around there was no
pressure and no one put it in my head that I was abnormal in any way.
Don't let anyone deter you, and if it doesn't work out or you can't
go for as long as you hoped... it is what it is and you have to accept
that and you are no less of a woman! You're more than just a woman...
you're a mom. :)
From Jenn, in Georgia, in February 2011:
Before my son was born I made sure I had a fancy Medela breast pump, a nursing cover in every color to match every outfit, milk storage sets and insulated totes to keep breast milk cool when I pumped at work. We were all set. I was sure I was going to be the best breast feeder anyone had ever seen. The word "formula" was taboo in our house.
Before attending our birthing class I had already read through the La Leche League breastfeeding book as well as several other books on birthing and caring for baby. Our instructor made sure to emphasize that ALL women can breast feed. One mom asked about not making enough milk and our instructor immediately shut her down by saying "there is no such thing as not making enough milk. If you're not making enough milk, you're not putting your baby to the breast and/or pumping enough". Thus, with all of this information, I naturally assumed that every woman could breast feed.
When Adam was born I immediately asked for the lactation consultant. I wanted to put him on my breast before any family members came in to visit. The consultant was there within minutes and we had a good session. I was so loopy from the medications given to me during labor that I don't remember a lot about that particular session. Adam slept most of the first 24 hours but on the second day things changed. He was crying non-stop. The lactation consultant seemed to live in our room helping me get a good latch. We thought that we were having latch issues becuase he was biting me and screaming when I put him to my breast to eat. The consultant was at a loss and offered a nipple guard. This seemed to calm things for a few hours but the screaming continued all through the day and all through the night. It wasn't long until we were putting a tube into the nipple guard (filled with sugar water) to encourage the little guy to latch and suck for more than 30 seconds. I refused to let the lactation consultant put me on a breast pump as I was terrified of causing nipple confusion.
Adam was born on Monday and our first pediatrician appointment wasn't until Friday. I had beed waiting anxiously all week for my milk to come in. My breasts never felt full and Adam was still screaming non-stop. I really wasn't sure what was going on. According to all the experts, I was making collostrum and that was sufficient until my milk finally did come in. When we arrived at the pediatrician we were all tired and frazzled (since none of us had slept in a week, literally). Adam had lost almost a full pound over the course of 5 days. He was born weighing 7lbs. 4oz and was now down to 6lbs, 6oz. The doctor immediately left the room, came back with a bottle of Similac ready to feed and popped it into my baby boy's mouth. No questions asked. Adam sucked that bottle down faster than I could blink my eyes and I began to sob and sob and sob. I had been starving my baby! Needless to say, he slept for hours after that feeding. What a horrible mother I was! I will never get over those feelings. The doctor demanded we give Adam formula on demand throughout the night and bring him back in the morning. If he hadn't gained at least 4 oz. we would be admitting him to the hospital. The doctor also assured me that I would get my milk any day.
The next day came and Adam was a different child. He slept and ate and all was well now that his little tummy was full. He also managed to gain 4oz over the 24 hour period since we had last seen the Dr. When we were home I was pumping furiously but all I ever got were splatters. My friend from college came for a long weekend visit (she is the breastfeeding queen) and immediately told me something was wrong. I went to the lactation consultant, started fenugreek, goats rue, reglan and began using a hospital grade pump. All of this brought me from splatters to an accumulated one ounce per day. I was heartbroken. I would never be able to sustain Adam on my own. I continued pumping and medicating daily but the most I ever got over a 24 hour period was 2 ounces. I made sure to put it directly into his formula each day.
After about 2 months I decided to throw in the towel as I was working full time and wanting to devote my time and affection to my baby. My OB/GYN confirmed that I had IGT and a possible breast deformity and that I would probably never be able to breast feed a baby without supplementation. Those first few weeks were some of the most emotionally taxing days of my life. I cried all the time knowing that I couldn't breast feed and I wanted to. How unfair! So many women let their breast milk dry up and choose to formula feed, why couldn't THEY be the ones with IGT? I was embarassed to go out in public with my formula dispenser for fear that others were judging me and thinking that I was a lazy mom.
Adam is almost 2 years old today. He is the light of my life and he is oh so smart. Formula feeding was not the end of the world. He still loves me and knows that I am his mommy and I can't say that things would be much different for us today if we had been able to breastfeed. Now I know what challenges lie ahead when we do finally have another child. Hopefully, I will be able to produce a little bit more breast milk but I am emotionally prepared if I produce nothing.
From Heather, in U.S.A., in January 2011:
My name is Heather, I'm 32 and have a 2 year old son and another baby on the way. My story is much like everyone else's IGT story. During puberty by breasts literally "developed" overnight. They weren't there one day and then all of a sudden there were! I thought these little tiny buds were just the beginning but little did I know that it was all I was ever going to get. I was/am a tomboy so I didn't think much about it and my boyfriends and now my husband never complained or even asked why they were different. I was a little self conscious about it but just figured breasts come in all different sizes and shapes and had a really good sense of humor about it.
My breasts didn't change during pregnancy but they say that happens sometimes and your breasts don't fill up until after delivery. So I wasn't worried. Right after I my son was born he latched on ok and seemed content with what came out. We slept for a long time and I was told that I have to wake him up to breastfeed him so that's what I did. He wasn't latching on (probably because nothing was coming out) and screamed all night long. The nurses kept telling me that I can't go home until we established a good breastfeeding relationship... So in comes the nurse brigade propping me up with pillows, telling me to talk to the baby, telling me my nipples were flat, they were literally grabbing the back of his head and jamming his mouth onto my boob! Meanwhile, he's screaming, I'm crying.
They hooked me up with a lactation consultant who took one look at my breasts and said, "Oh, I can tell by the shape of your breasts that you don't have enough glands." She got me that tube thing you tape to your breast and a breast pump. I ditched the "boob-tube" pretty much the first day.. I just didn't have the patience for it. I pumped what I could and put it into a bottle with formula. I pumped every 3 hours for 2 months until my nipples cracked and had plugged ducts every week. When your pumping the pain doesn't "just go away eventually". I just couldn't keep it up so after an entire weekend of guilt ridden tears I decided to go all formula. When I did stop pumping... the milk went away just like that! No gradual period of leaky breasts or weaning.
So now I've got another on the way. My breasts haven't changed. I have a strong feeling that it will be the same thing all over again. I asked OB/GYN about this and she did an exam and said she doesn't see anything wrong. I'm going to go to a breast care center that has a support system... but right now my hopes are not that high. I'm going to try to give the same thing to my new daughter that I gave my son... 2 months of pumping about half of what she'll need and formula for the rest.
I hate my breasts now and I don't even want my husband to enjoy them even though he seems to like them just fine. Like another woman said... they are just there. Ladies, your stories are my story, I feel your pain. I feel like the only person in the world with this problem. It seems like EVERY other woman has nice round breasts except for me. I just hope and pray my new daughter doesn't grow up with this problem.
From Melissa, in August 2010:
Please see Melissa's blog, Confessions of a Dr. Mom, to read about her experience with IGT: Breastfeeding Broke My Heart
From Vanessa, in August 2010:
I would first off like to thank you for creating this site, I feel that it is a great help.
My first experience with breastfeeding was with my son who was born September 1st 2007.
I was determined that I was only going to nurse him, so like many other mothers I took classes,
read all the literature, and felt super confident that I would be able to BF.
I had a lactation consultant come in after he was born and had her help me get him to latch on correctly,
she was not very helpful at all and she was kind of rough with him and me,
and she was paying more attention to the t.v. that was on in the room than us.
Anyway, he nursed and nursed until he would fall asleep and wake up 20 min. to a half hour
later starving and ready to eat again, and I had people tell me that that was normal, that it was cluster feeding,
and just to feed him as often as he wanted and I would produce more milk the more I nursed.
I got him home and the first week I felt like something wasn't right. He cried all the time
and he would suck and suck and scream. When we took him into the doctor's he had gone from 8lbs 1oz to 7lbs
2oz. He had pretty much lost a whole pound. I went to the hospital to seek more help from the lactation consultant
and she helped me with getting him latched on and she weighed him after I nursed him and he really didn't change
all that much, but she sent me home and told me to continue trying, and that she would check in with me.
In the meantime I was taking supplements, drinking tea, I had even gone to an accupuncturist to see if that would
help. Anyway, tons of money later nothing seemed to be working, and I began supplementing with
formula and my son started sleeping at night and he had moments during the day where he was awake and not screaming,
it was a miracle!
I continued to see the lactation consultant and finally at one of my visits she told me my breasts
were different, that they were widely spaced apart , and that I might not ever produce enough milk, but she
suggested trying to pump every 2 hours to see if my milk would increase. I would sit at the pump for a half
an hour at a time to only get out an ounce to maybe two ounces (if I was lucky) of breast milk, my milk
never increased and my son preferred his bottle to me which was so devastating. I suffered horrible depression
due to all of this and felt like a huge failure.
I then decided to do some research about all of this and realized that my breasts never changed when I
was pregnant nor did they ever really change through puberty, I always sorta felt like my breasts were different
but I just never let it bother me until I couldn't BF. I just recently had a daughter born June 19th 2010. She is
beautiful and healthy and I nursed her with the help of a supplementle nurser for a month and when she and I became
uncomfortable with it I switched her to a bottle and I pumped out what little I made and gave it to her, and I
just recently had to stop doing that and she is just on formula now and she is healthy and she is growing and
I am not going through near the stress I did with my son. I still feel like a failure as a women and mother
at times because I cannot BF, but I am so thankful for my beautiful children, and I hope that someday that
maybe there will be some magic cure all for those of us who suffer from IGT
From Rebecca, in May 2010:
My name is Rebecca, I am 30 years old and I have a 15 week old daughter. I have always been extremely self conscious about my breasts, but quite confident about my ability to breastfeed, since "every woman can breastfeed, if they're willing to put in the effort" and "small breasts work as well as large breasts". My breasts did not develop in a normal way, they're tiny, oddly pointy, with no real fullness and my areolas are still "puffy". I have long suspected that I have PCOS, but when I mentioned my concerns to my GP, I was scoffed at, as I am not obese. When I fell pregnant, I developed a few extra veins in my breasts and my nipples got larger. That was it. I produced a few drops of colostrum from about 20 weeks, which made me feel quite relieved, as I suspected I might have some minor breastfeeding issues due to my weird breasts. My daughter was born via emergency c section, after 14 hours of active labour and an hour of pushing, with no pain relief, except the gas, which was totally useless. My repeated requests for pain relief were ignored, as was the fact that my baby's position made it impossible to give birth naturally (very sharply deflexed head which did not resolve after 14 hours of strong contractions two minutes apart). Thanks to the awful birth experience, I now have PTSD, for which I am receiving psychological treatment.
When my girl was born, she was happy, healthy and alert. She latched on straight away and had a good feed. I produced enough colostrum to keep her going for the first 24 hours. Then, she wouldn't sleep. She was feeding for 3 and 4 hours at a time, falling asleep for 20 mins or so, still on the breast, then waking up and repeating the 3 hour feeds. I expressed my concerns about the fact that she screamed the second I took her off the breast and the fact that she had only brick dust in her nappies. I expressed these concerns to every nurse, midwife and doctor who came near me. For three days. "Everything's fine, she's just bringing your milk in". My milk had changed from colostrum to white milk after about 48 hours, but not one of the medical staff believed me, because I hadn't experienced any engorgement. "Your milk isn't in yet, it takes longer after c sections, you'll engorge when it does, the baby is fine, you just need to relax". Latch, positioning and sucking were all great, according to the dozen or so people who checked. She was not weighed at any point.
When my baby was 3 days old, she became jaundiced and lethargic. She looked pinched and drawn and starting wailing, long low wails which sounded like something was seriously wrong. She had a very high temperature and was seen by one of the paediatricians, who told me that they had to test her for bacterial infections. They had to catheterize her to get a urine sample, since she hadn't peed for days. They still didn't pick up on the fact she was dehydrated. Eventually, I had a meltdown, and one of the nurses gave her some formula so I could get some sleep. I began to supplement her, after breastfeeding for 40 mins to an hour. She inhaled huge amounts of formula from the beginning, although it still took a few days until she had a wet nappy and we could finally leave the hospital, after a number of altercations with one of the staff members who thought I "just wasn't putting in the effort" and went out of her way to make it difficult, including such tactics as denying me access to a bottle of formula until I had breastfed my baby for as long as she thought appropriate. Since my girl was on a controlled prescription formula, I couldn't make up her bottles myself, so I had to wait for her to do it. She made me wait for 4 hours with a very hungry baby who spent that entire time on the breast, while I was hobbling around the corridor, bent double due to lack of painkillers, crying, trying to find someone to make up a bottle.
When I got home, I continued to breastfeed for an hour or so before giving her the bottle, although she drank just as much if I didn't breastfeed. I could hand express about a quarter of an ounce, at my absolute maximum production, after 6 weeks of taking blessed thistle and fenugreek, allowing 4 or 5 hours of comfort breastfeeding on top of normal feeds and pumping if there was more than 3 hours between feeds. In the end, I gave up due to lack of sleep and my physical inability to maintain such an exhausting regime, when recovering from the birth. Every one seemed to believe that such simple solutions as checking latch, etc, feeding on demand, feeding frequently, would resolve the breastfeeding issues. Well, they didn't. I still feel extremely guilty about the fact that my baby is on the bottle and I am eaten up with jealousy when I see someone breastfeeding a contented baby or when I hear them whining about oversupply issues, such as painful engorgement. I have come to realise that at least some of my emotional trouble is caused by the fact that ample nurturing breasts are the definition of femininity and I feel like an androgynous, unfeminine failure as a woman. Thank you for listening to my story
From Kathryn, in March 2010:
Thank you so much for getting the word out there that there are medical conditions in which some women cannot breastfeed. In 2006 I found myself unexpectedly and excitedly pregnant with TWINS! I read every book, wanted to breastfeed, quit my job to stay home with them, completely devoted to these two little people that I wouldn't meet for 5 more months!
I've always had very very small what I call "breast buds", not even enough to fill an A cup, I've pretty much looked like a prepubescent teenager my whole life (no curves, no acne, no body odor, irregular periods... seriously, it's like I never matured past age 12) and it's just something I've grown to accept, but hide from the whole world with push up bras, layers of clothing, and padded undergarments that give me curves. Even though I've had regular gyno visits and breast exams since I was 15, no Dr. ever mentioned that there might be a problem with my ladies. Not even my OB who saw me every two weeks through out my entire first pregnancy and never noticed or mentioned that my little buds were.. ummm... still just little buds.
Then the babies came in a quite traumatic way via emergency c-section at 34 weeks. The lactation consultant met me in the NICU to teach me how to feed the babies, but it was the most physically painful experience. With tears and a clenched jaw, I continued to try and feed them. A week later when I wasn't producing any milk she got very aggressive with me, had me on a 20 hour schedule where one hour I'd feed a baby, the next hour I'd pump, the following hour I'd feed the other baby, then pump again. She let me sleep from midnight to 4am, then we'd start again, also trying to eat the recommended 1600 calories and drinking the recommended 8 glasses of water while she had night nurses knock on my door at all hours and sit there, force feeding me, and watching me pump. It was awful, I know they were tube feeding the infants in the NICU, so they were getting plenty to eat, but it wasn't from me, I was never able to produce more than an ounce or two of milk PER DAY, even with the relentless feeding/pumping schedule. I was exhausted and on the verge of a breakdown. She said I wasn't trying hard enough and that I really didn't want to breast feed. I was devastated, felt horrible, thought I was the worst mom in the world. Two weeks later I went home with cans of formula and two perfect little boys. I continued to pump and breast feed for the next four months. I read every book I could, looked at every blog, tried all the tips, herbs, supplements, tried every wives' tale, but I never got more than an ounce or two and the infants never seemed satisfied. I was frustrated, all this information said that every woman can breastfeed and if you aren't producing enough, you must be doing something wrong or supplementing too often. The next day, I got all geared up to exclusively BF, I had my station all set up with snacks and water. It was disatrous, after 8 hours I was exhausted, frustrated, the babies wouldn't stop screaming and I was on the verge of a total break down. I gave up bfing that day.
Then 6 months later I found out I was pregnant, again. When baby #3 came in the middle of the night, at 35 weeks, via emergency c-section I was devasted. Not only can I not feed a baby, but now I can't carry one to term! I wanted nothing to do with the baby for the first day or so and the nurses bottle fed him for me until the same evil lactation consultant from the previous year returned to tell me that we gotta get that baby on the breast. She again accused me of not doing enough and I shut down. Four days later we went home even though I couldn't stop crying because I felt like such a failure. A few days later I went to another hospital where they offered a free BF clinic where if you brought a hungry baby and they would help you feed him. And the nurse was really nice, she weighed the little guy, handed him to me, and then started asking some questions about feeding, pumping, things like that. She asked me how much milk I produced when I pumped. I sheepishly replied, one, maybe two ounces first thing in the morning. And she said, I'm not surprised. I said, huh? She said I can tell by the shape of your breasts that you don't produce much milk. I said, huh? Finally, someone who understands! She helped me get the baby on and I fed him until he stopped sucking and fell asleep, just like I had been the previous days, just like I did the twins, about 20 minutes. Then she weighed him, and he weighed about 1.5 ounces more than before the feeding, then he woke up crying, hungry, rooting, and I felt once again like a failure and started crying. She just told me to continue bfing, but also give him several bottles a day. And I left, sad, quiet.
I never bf him again, but I did pump every morning, my little ounce for a few more weeks until I thought it was futile.. what was one little ounce going to do for a baby that was drinking 24-30 ounces of formula a day? It became my dirty little secret. I told friends/family that I was BF, I pretended to BF him when company was over because I was ashamed. To this day, when it comes up, because it ALWAYS does, I tell perfect strangers that I bf my kids, just to spare myself the lectures, the dirty looks, the stories about how Aunt Mildred's second cousin's daughter's best friend breast fed her triplets for five years.
It wasn't until a year later, I got on a mom's blog, and I ran across a lady who had mentioned something about insufficient glandular tissue. I started doing some research on it and now I'm pretty convinced this is what I suffer from, but I don't plan on having any more kids and I'm not after an official diagnosis. But why did it have to be like this, why was the first lactation consultant so mean to me, and why didn't the dr. or OB say anything about the possibility of having this condition? It would have helped me, a lot, to have been aware about this problem BEFORE I was determined to exclusively bf my babies. I would not have felt like I failed, and it probably could have saved me month's of therapy and the anguish my family suffered while I battled severe ppd (it got to the point where they wouldn't let me be alone with the baby). This should be something that more women are made aware, which is why I'm thankful to find sites like yours that bring it to light.
From Heidi, in December 2009:
I am nursing a 5-month old daughter. (birth date 7-21-09) I first had severe low supply issues with my son in 2003. The diagnosis was insufficient glandular tissue. I had some concurrent medical issues also at that time (addiction to sleeping pills) that made me think that perhaps the diagnosis of IGT was a fluke. So I waited until this pregnancy and lactation to see what my production would be like this time around. It is improved (8-10oz/day - up from 6-7oz/day for my DS) but still obviously nowhere near what it should be for supporting a full-term baby.
I am taking domperidone, more as an insurance policy than anything. I went back to work last month so it was helpful to have a med on board that increases prolactin levels (I found myself pumping not as much as I would have liked). It doesn't seem to bump up my supply at least in the long-term - I think I got a transient increase for like a day or two when I just started it back in Aug '09. I have tried every herb known to man including goat's rue and have found none of that has helped me. One thing I did that may have helped during the pregnancy to develop glandular tissue was natural progesterone cream.
I have gotten donor milk from the Yahoo Milkshare group, so we have never had to supplement with formula. We supplement with around 20oz of donor milk per day. I use a Medela SNS to supplement at the breast and have done so since her 2nd day of life. I was even able to save up colostrum during my pregnancy and collected about a third of an ounce of it by the time my daughter was born. I was proactive with getting donor milk prior to my daughter's birth as well, and got about 50oz on hand even before my delivery. Some of it was transitional milk which was helpful - my DD had jaundice and I believe the colostrum helped clear the bilirubin out of her system.
So, that is my story and I'm sticking to it!
From Michelle, in Deatsville, Alabama, in May 2009:
I just want to say that I'm in tears reading your story and the few who have shared theirs. I feel so alone with the problems I've had. I had my first child in December 2002. She latched on wonderfully, and seemed to be doing well until day 3. She screamed constantly, had no wet diapers, and was just not the same baby she'd been the 2 days before. I finally gave in and gave her formula because nothing else was working. She was so much happier after that. I chalked it up to just giving up.
When #2 was born and the same thing happened I didn't think much about it, just went through the same things. I still tried, but when she got to the point of no wet diapers at all I gave in and gave her formula. When I got pregnant with #3 I started doing research. Why in the world could I not nurse? My breasts have always looked "funny" to me, they're small, far apart, and semi-tubular. They never changed (aside from slight nipple tenderness in the beginning) during pregnancy or after birth.
I never had any full feelings of any type. I could hand express a few squirts, but no more than that. I never expressed any colostrum, only white breast milk. Pumping is a joke for me, I can't even get more than 2-3 drops. When my son was born I still attempted. I nursed him, pumped, used a SNS, everything. I still had no success with him. I'm now pregnant with #4 and I'll try again, but I don't expect much.
After mentioning my problem to my gma, she said she couldn't nurse her children and neither could her mother. My mom's breasts look "normal", but she said she never had any changes while pregnant (she didn't even attempt to nurse). Sounds as though I'm just doomed :(
From Emily, in Toronto, Canada, in December 2008 (Emily gives an example of being able to feed exclusively with breastmilk, although she had breast hypoplasia):
I was concerned I would not have enough milk to feed my daughter because my breasts did not enlarge much during pregnancy, though they did get tender and veined. I ended up with an emergency cesarean due to baby being too big to pass through birth canal, and she lost a pound in the first few days. The nurse told me to supplement with formula. However, four days after she was born, my milk came in, and I fed her exclusively for six months (and later with solids).
I realize that I may have a condition called breast hypoplasia. My breasts are widely spaced and did not enlarge much during pregnancy. According to one report, women with my condition may take a longer time for their milk to come in. Of course I'm not sure whether the delay in my milk production was due to the cesarean, the stress I experienced in hospital, or breast hypoplasia, but I can't rule the third possibility out. If I ever have another baby, I won't be alarmed if the milk doesn't come in right away.
From Stephanie, December 2008:
I gave birth to my first baby in Dec. 2006. I assumed I'd be able to breastfeed, and was very upset and disappointed when I could not. My story is pretty much the same as any mom with IGT...try so hard, do everything you can think of, try all of the herbs, teas, etc. but still have no success.
I am now pregnant with child number two, and after doing much research into natural progesterone, I have started using a natural progesterone cream last Saturday (natural progesterone USP). Hope this works as nothing else seems to be able to. Also, I know that I will be able to better deal with not producing enough milk this time around.
I HATE the misconception that "every woman can breastfeed"...and how so many women are so quick to judge when a woman is not able to breastfeed.
From Lori, South Weber, December 2008:
I had some breast change while pregnant, and I had a horrible birth experience that ended up with heavy blood loss ,IV doses & trauma. I thought the hurting part was over until my 10lbs son started losing weight and "brickdust" in his diapers.
I was then told my milk wouldn’t come in until day five ,then I wouldn't have to supplement him anymore. It was the 4th and no lactation consultant for a week.
I tried every two hours to breast feed, pump and use hot rags. My baby screamed until he got lethargic. He still had brick dust in his diaper. Day 7 came and my milk didn't. I was only getting .5-1 ounces combined pumping. I felt defective. When I reached the lactation consultant, she said I was fine and I needed to take him off supplementation because it was affecting my supply issue. I took the baby in and she said he was sucking great.She weighed him after the feeding...He had gained .3 ounces.
With a straight uncaring face, she handed a life sentence of never fully breast feeding any of my babies and nothing would change that because I was one of the .5 percent of women who had insufficient glandular tissue. I cried but all she said was, "you might as well just bottle feed because it’s too stressful to breastfeed a baby when you are incapable".
I wanted to find something to miraculously change my fate. I took dom peridone, blessed thistle, fenugreek, teas, and set timers, used SNS, I hospital grade pumped until I was nearly crazy. I was obsessed with anything that could change my titles of unlucky,"insufficient, incapable" person. Unfortunately,I didn't ever produce more than an ounce.I lost my milk totally when I went back to work. I feel cheated. No one told me I could have a possibility of not breast feeding.
When I needed research I couldn't find any. It is only a small line at the bottom of one page in a pamphlet. 20 pages on engorgement, one sentence on IGTI still feel guilty about it to this day. My doctor told me he I probably just didn't try hard enough. I had people on the street, family, church members, everyone commenting whenever I bottle fed him. "Why aren't you breastfeeding? Breastmilk babies are smarter &happier. Mom's care more about themselves than the babies."
My baby is 5 months old, happy, smart, loving and more advanced than other babies his age. I don't know what I will do next baby. I hope someday there is a cure. I wish I could breastfeed my baby. It's nature, it's real, and I can't change it, but I am overjoyed with my baby. Oh yeah and other people who have overflowing milk and overflowing advice on how I didn't try hard enough can go find their own issues to deal with and not judge others for things that are out of their control.