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