IGT: Four Stories from Moms Who Have Been There

Nursing with homemade SNS

Nursing with homemade SNS

This post is dedicated to the incredible moms I have met over the years who have IGT.

The stories below are as uniquely individual as the mothers who wrote them. Even so, they do have many elements in common. All of these moms were very committed to breastfeeding. None of these moms were screened for possible IGT prenatally or early enough postpartum to avoid severe infant weight loss. All of these babies lost a significant amount of weight—a weight loss that was completely avoidable. All of the mothers put an extreme amount of effort into producing enough milk for their babies. All of these mothers have felt guilt and remorse—even though none of this was their fault. All of the mothers received inappropriate advice from the professionals they trusted to help them with a very basic function—feeding their babies. These mothers have no reason to feel shame. It is our system that has let them down.

Thank you to all the mothers who have contributed your very personal, and often painful, stories. I didn’t have enough space for all of them! Your generosity will help other mothers and babies avoid unnecessary suffering.

IGT mom #1
I looked forward to breastfeeding since the first of my friends began having babies. When I became pregnant, I started reading books about breastfeeding and signing up for classes.  I knew that my breasts looked weird.  However, I didn’t worry about that because I knew from my research that size and shape didn’t matter. My breasts were very sore during my first trimester of pregnancy. My left gained nearly two cup sizes, and my right gained maybe a half cup size.  I remember thinking, “this is awesome, this is normal,” whenever the tenderness was getting the best of me.

My newborn son was an expert at latching and sucking from the beginning. I knew that his latch couldn’t be better, and I congratulated myself on successfully breastfeeding within his first half hour of life. The hospital lactation consultant praised my son’s perfect latch and but he fell asleep after a few minutes. Just before we were discharged from the hospital, I noticed the “brick dust” urine in my son’s diaper. The postpartum nurse assured me that it was fine.

When we got home, I happily nursed my little boy on demand around the clock. I held him skin to skin inside my bathrobe, I wore him in my Moby, and I nursed non stop. On his third day of life, my partner’s mother asked, “Does he look a little jaundiced?” My partner asked why his lips seemed to be chapped, and we concluded that it must just be dried milk. We wondered why his urine was still orange, and he hadn’t had as many bowel movements as I thought he should be having.

At the pediatrician’s office, I was shocked to learn that my son (who weighed 7 pounds 13 1/2 ounces at birth) had lost just over 10% of his body weight and was weighing in at only 7 pounds. I didn’t understand how he could have lost so much weight when he seemed to be constantly nursing. The pediatrician was concerned about his jaundice, dry skin, and diapers, and she urged us to begin supplementing. She also suggested I see a lactation consultant immediately. I cried the entire drive home. I gave him some formula using a medicine dropper. I cried again as I saw his eyes light up and his entire attitude change almost instantly. It was like he was being fed for the first time. After a few feedings administered this way, he was like an entirely different baby. No crying, full diapers, restful sleep. I had such feelings of guilt and inadequacy when I realized that I had been literally starving him for three days.

The hospital’s lactation department had no one available to see me for at least a week. So two days went by with my nursing and following up every feeding with droppers of formula, hoping and praying to wake up with engorged breasts. I added pumping after every feeding to this regimen. I only produced a few drops of milk.

Finally, I found a private practice IBCLC who was able to see me first thing the next morning for a consultation. She told me that I have insufficient glandular tissue and she suggested that I rent a hospital grade pump to use at least 6-8 times a day while taking galactagogues and nursing my son using an SNS to supplement. After two weeks of this, I saw an improvement from just a few drops per pumping session to about 10 mL per pumping session. My maximum production came when my son was 8-10 weeks old – an estimated 4-5 ounces per day.

My son is now 19 weeks old, and we have transitioned to bottle feeding and nursing only for comfort. I am no longer pumping or taking galactagogues. This is working for us, and I plan on allowing my son to nurse as long as he wants to. I am still currently producing milk in both of my breasts, but I have no idea how much.

IGT mom #2:
I knew we were going to breastfeed. My baby was born weighing 8.14. On day 4 I noticed she was not peeing. On day 5, I realized she had eaten 17 times the previous day and only peed twice. I saw the lactation consultant the next day. We learned that she lost 11.5% of her weight.

We immediately started with a SNS (Supplemental Nutrition System) and herbal supplements. I also ate lactation cookies, and took domperidone. Nothing worked.

With the next baby, we started supplementing in the hospital because she had lost 10% by day 3. I had more experience so I knew what to do. She is 7 months old and still nursing. We nurse then I supplement with a bottle. I finally got my IGT diagnosis back in May when a lactation consultant looked at my breasts and said “yes, that is your problem.” I was grateful to her because other lactation consultants had not noticed.

IGT mom # 3:
I was diagnosed with IGT after my first baby was diagnosed with failure to thrive. He lost 15% of body weight, and I tried so hard to build supply, but only got about 1 oz per day pumping. When I sought help from my midwife, she gasped and said “have your breasts always been that long?” Of course, they have! They’ve looked like this since I was about 12.

When I got pregnant with my second, I joined an IGT facebook group. I took herbs during my pregnancy, and not much happened. Toward the end of pregnancy, I started a low dose of a medication that can support ductal growth. Shortly after that, I experienced tenderness and growth. My breasts even had a different shape. My supply increased from drops with #1 to about 12-16 oz with #2. I think with lots of support and the prenatal herbal and medication regimen I might be able to make enough milk if there is a third!

IGT mom # 4:
I always knew that I would exclusively breastfeed and if I wanted to give my baby a bottle, it would be pumped milk from my stash in the freezer. I always just assumed that was how things worked.

When my daughter was born, I was exhausted, but all night I would wake up saying it was time for her to eat and right then she would wake up ready. After that I felt like my body knew what it was doing and everything would be fine.

The next day at each feeding she got more and more fussy either screaming and refusing to nurse or just whining and going back to sleep. Soon she developed jaundice and started losing too much weight. The nurses began weighing her before and after feedings,  and found that there was no difference in her weight. Even so, they let us go home after 5 days.

When we got home there was nothing I could do to get her to stop screaming. It was too much and I asked my husband to give her a bottle. Upon giving her that first 2 oz. bottle she fell fast asleep. I cried and started pumping with the manual pump the hospital had given me. After almost an hour I had a combined total of less than 1/4 ounce.

I was told I wasn’t drinking enough water and I started drinking an entire 32 ounce hospital mug of water every time I nursed. Unfortunately my daughter never would latch again after that and I couldn’t blame her. I told myself that it would be ok and I would pump and when my milk was established we would work on latching again. I drank gallons of water and ate a lot of oatmeal cookies because I heard that could help. I pumped around the clock and then would hand express after to make sure I had gotten every last drop. After a few weeks I got up to making 1 ounce total. By the time she was a month old we officially called it quits.

Three years later I was pregnant with my son and reading everything I could find on what I had done wrong and what I could do differently. I learned about herbs and other supplements used to boost milk production, so I felt prepared. After this birth I enlisted the help of a nurse immediately.  I felt very optimistic. We were released 36 hours after I gave birth. The first week seemed to go smoothly. But then he started getting fussy at feeding time and needed to be attached to me constantly but never seemed satisfied. When he was 11 days old things were getting increasingly bad and that night as he lay in my arms screaming while I sobbed, I noticed his clothes were getting quite baggy. I felt that I was starving my child. Right then I made him a bottle.  After that I let him nurse each feeding and then supplemented with formula. By a month old he quit nursing and I started pumping and giving him both that and formula. When I started pumping, I realized that even with all of the supplements i was only making 1 ounce combined on the best days. We called it quits at 6 weeks.

I am now 6 months pregnant with our 3rd and last child. During this pregnancy i concentrated less on finding ways to boost my supply and more on what could be causing this. Finally I learned about Mammary Hypoplasia, also known as Insufficient Glandular Tissue. Wow! It sounded exactly like my situation. The more I read the more I understood that the reason I couldn’t breastfeed wasn’t because I was doing something wrong but because my breast weren’t developed properly. I have never been officially diagnosed; but with everything I have read and seen, it makes sense.

With this baby I will formula feed. I have struggled since my daughter was born feeling like I am a failure. This time I am choosing to do what is going to be  good for my child and best for my family. I still struggle with my feelings, but the one thing I have learned is that this isn’t my fault and all that matters is having a fed and healthy baby no matter which way I do it.

Note: Please check with an experienced IBCLC prenatally and/or immediate postpartum if you suspect you may have IGT or if you’ve had milk supply issues with previous babies.  Supplementation with commercial formula, donor human milk, or a combination of both is necessary with IGT.

See also: Low Milk Supply: Could it be IGT?

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