By Heidi Thomas
My breastfeeding journey has been just that—a very long, tiresome, surprising and rewarding journey.
Seven years ago I was diagnosed with a prolactinoma, a prolactin secreting tumor on my pituitary gland. I hadn’t cycled for about two years, and was using OrthoEvra, the birth control patch exclusively prior to my amenorrhea for nine months. I visited my family practitioner, mainly out of curiosity as to why I hadn’t had a cycle for so long. She did a routine blood work up and found my prolactin levels to be unusually high, so she ordered an MRI of the pituitary gland. Sure enough, a small tumor was present. I was immediately prescribed bromocriptine to contain the tumor from spreading and growing into other areas of the brain. Within a few months, my cycles returned and were fairly normal. It wasn’t more than a year later that we became pregnant with our first daughter, K. I had a normal pregnancy and routine vaginal delivery with epidural. While I had read a few books about breastfeeding during my pregnancy, my knowledge base and support systems weren’t strong enough to endure the problems we were about to encounter. K had a good latch and was nursing decently but on day three, it was obvious she wasn’t getting any colostrum or milk from me. The lactation consultant immediately started supplementing her with Alimentum in hopes that maybe my milk would come in a bit later. I used the SNS exclusively while formula feeding. I started pumping after every feeding. I took copious amounts of Fenugreek. To say I was devastated would be an understatement. I had just assumed that the mechanics of nursing would work themselves out. I had never prepared myself for a lack of milk production. I never experienced the euphoria of nursing much less a pain free nursing session. Looking back, I wonder if K was tongue tied. I developed a terrible breast infection, was cracked and bleeding and cried through nursing and pumping sessions. Eventually, after 7 weeks, I gave up nursing and went straight to bottle feeding upon the recommendation of my family doctor who said “formula’s not that bad”. The only explanation as to the lack of milk production was that my body was “protecting” the tumor from growing and withholding large amounts of prolactin from entering my system. I clung to this information—that it was my body’s way of keeping me from dying, basically. I was still skeptical inside though and swore I’d get to the bottom of my pituitary issues one day. I wasn’t content with my daughter’s pediatric care, so I sought out another pediatrician in the area. Upon interviewing him when K was 7 weeks old, he expressed deep concern over her being exclusively formula fed. He gave me information on how to find local milk donors and encouraged me to pursue those options. So, I did what every good mom does and sought high and low for milk donors. I knew that if I could find one, there had to be many others out there that would help us. Sure enough, K was exclusively breast milk fed from 7 weeks until 13.5 months.
I started seeking treatment and answers for my lack of milk production in between my first and second daughter’s birth. I knew there had to be help for me, I just needed to find it. I started receiving care at OHSU by a Pituitary Endocrinologist. She confirmed my prolactin secreting tumor and couldn’t really give me any additional advice as to why my body didn’t make breast milk. She wasn’t invested in breastfeeding though, and said her children were both formula fed and healthy. I continued seeing her for my care, but decided that help for nursing would come from someone else. About a year later, my doctor recommended I start a drug called Cabergoline. She said there were new studies that were suggesting this drug could essentially starve the tumor and potentially kill it. I was willing to try it, as I was certain that if we could just get rid of the tumor altogether, then maybe I could nurse my future children. I was on Cabergoline for 9 months. After a follow up MRI, the tumor had grown to an uncomfortable size. I underwent brain surgery about a week later and had the tumor removed. They warned me about the risks of infertility, etc. since they were operating on a sensitive part of the brain. 2.5 months later, we moved to China for an overseas teaching opportunity for my husband. 6 months later, we conceived our second daughter. I had a normal pregnancy and natural vaginal birth and did everything I could to ensure a completely natural birth, in hopes of giving breastfeeding my best shot. Looking back over both pregnancies, my breasts never changed size, I didn’t experience any type of engorgement nor let-down experiences. I started nursing S immediately after birth, and had skin-to-skin contact immediately. She left a large hicky like bruise on my left breast within a few minutes of suckling. This girl had a strong suck reflex! I braced myself for the pain of nursing but continued to persevere. I had Dr. Jack Newman’s all purpose nipple ointment, lanolin, gel soothie patches, amongst other natural remedies for healing my sore nipples well ahead of S’s arrival. Earlier in my pregnancy, I had been gifted a large chest freezer from a friend who was moving, so I thought that was a sign that I should start seeking breast milk donors just in case I had a low supply. I put an online ad on a parenting group I’m a member of in Beijing seeking out donor milk. Within a few days, I’d already had several moms responding stating they’d love to be ongoing milk donors for our baby. I could barely believe that I was able to secure donor milk ahead of time in China. I’m so thankful I did, because my milk never fully came in post delivery. I remember being giddy with excitement when in late August I was able to hand express a couple drops of colostrum in the shower. I thought for sure I would have a full supply of milk if I could hand express before our daughter’s arrival. Unfortunately, that was wishful thinking. I nursed literally around the clock for the first week. S barely slept for any length of time the first few weeks, as she was constantly nursing and trying to get enough nutrition to her body. She was born weighing in at 7.2 and dropped at her lowest to around 5 pounds. The lactation helper at the hospital we delivered at was puzzled and said she had a good latch from the start, and that she couldn’t figure out why things weren’t working out for us. It was around day five that I called the La Leche League hotline number in Shanghai and spoke with a sweet mama. She was such an encouragement to me that day and kept me from giving up on nursing. I was deeply committed to making this work and was scared that starting supplementation would be a slippery slope. It became apparent by around day seven that I needed to start supplementing something for S. Here output was not what it should have been at all—there were several days in between bowel movements, her irritability at the breast was increasing and she was not gaining weight back like she should. I used the SNS exclusively as well as finger fed and cup fed. I got in touch with another LLL, an IBCLC in Beijing. She was a huge source of encouragement to me during this time. I had friends back home, in the states, who continued to encourage me to look into tongue and lip ties. They were convinced that S had some sort of posterior tongue tie that wasn’t allowing her latch to be efficient enough at drawing milk out. Meanwhile, several weeks passed and S slowly gained her birth weight back by around six weeks. I traveled to Beijing regularly for doctor appointments with a fabulous American expat pediatrician, and visited with my new friend and LLL leader about my case often. I pumped regularly, started taking 90mg of domperidone by around 3 weeks postpartum, started an herbal regime of fenugreek, blessed thistle and goats rue, drank copious amounts of water, tried visualization and relaxation exercises—you name it, I tried it. Nothing was working. I started to experience more nipple pain and soreness by around the fourth and fifth week. Everyone was puzzled. I was finally coming to the reality and conclusion that supplementing her would be essential long term, but at least I could enjoy a nursing relationship with her by using the SNS exclusively. In the days and weeks following, my family and I sought out donor milk urgently. Our hard work paid off and I was able to pick up milk from many different moms—both local and expats. I attended Chinese LLL meetings, shared my story with a well known lactation consultant who publicized our story on Weibo (Chinese social media site) and even received a large milk donation in the mail from Shanghai! Our story was going viral quickly in China, and it was apparent that we were an inspiration to many.
Her weight gain continued to be an issue, and after some encouragement from the LLL leader and her pediatrician, bottle feeding her in addition to nursing was implemented. S was simply burning too many calories at trying to nurse-albeit, ineffectively. She took a bottle easily and for about a week, things were going okay. After the first week of bottle feeding, I started noticing that she would make a clicking sound when sucking and she’d drool and not create a good seal around the bottle nipple. It was as if her problems breastfeeding moved into further problems bottle feeding. I started getting more serious about researching posterior tongue ties and started gaining confidence that this was a problem we were facing. When S was barely a week old, I had her evaluated for tongue tie at the international hospital where she was born, and they quickly dismissed it. They said she could stick her tongue out and that tongue tie was irrelevant. I felt discouraged and that no one would take me seriously. My friend and LLL leader in addition to her pediatrician listened to my concerns but were uncomfortable diagnosing posterior tongue tie as they just didn’t have a lot of experience in dealing with it. Up to this point, I’d undergone every test in the book to try and explain my milk supply issues. I had a vaginal ultrasound (I would NEVER do this again 3 weeks post partum! Ouch!) to check for retained placenta, all of my lab work was done including checking my thyroid function. Everything came back normal. I was not iron deficient. My prolactin levels were normal for a newly postpartum nursing mother. We were hitting a dead end quickly and everyone could feel it. Answers were around the corner and I didn’t even know it and my intuition started steering me deeper and deeper into posterior tongue tie problems and how that could impact a mother’s milk supply. I watched video after video on youtube related to tongue tie. I read every article on low milk supply and tongue tie and I could even feel a ridge or bump under her tongue indicating a problem. It was too convenient to dismiss my nursing struggles as my own though—after all, I had a complex medical history and there was no reason to doubt it was MY body and MY issues creating this mess. I wasn’t convinced.
I was invited to a breastfeeding conference in Beijing by my friend and LLL leader earlier in the month, and she asked me the day before if I’d be the live “case study” for the evening with world renowned IBCLC, Linda Smith as the key note speaker. I eagerly agreed, secretly holding out hope that this woman would be the answer to my problems—surely she would know SOMETHING that no one else did. Right? Right. I took the train up to Beijing, sat in a taxi for 2+ hours in traffic and made it to dinner nearly 45 minutes late. I was devastated and thought I’d lost my one and only chance at getting answers that evening. Thank God I was wrong! Barely 10 minutes went by before Linda saw me from across the table, commented on her frontal bone structure, observed her at a distance nursing and asked to see the baby to check for a tongue tie. She didn’t even need to ask other questions. She knew. With a quick washing of the hands, S was in Linda’s arms and we for the first time heard the best news of the year. S was tongue tied in the back and needed surgery to rectify the problem. She casually offered for us to fly to Dayton, Ohio for the procedure and guaranteed that she could help our nursing relationship with the help of other practitioners in her area. I eagerly agreed. At the end of our evening together, tears rushed to my eyes as Linda embraced me and told me with certainity that “I’ve got this.” It was just what I needed to hear after working tirelessly for weeks without seeing any improvement or light at the end of the tunnel. In the meantime, I was to pump every two hours, nurse, cup feed and try to build up my supply once again. Two weeks later, I landed in Dayton, Ohio and the morning following, S received her first cranial-sacral appt. There was an immediate difference in her head and she regained full range of motion in her arms and neck muscles. A few hours later, her posterior tongue tie and lip tie were treated by laser treatment from a well known pediatric dentist. For the first time, I experienced a pain free nursing experience from S within minutes of the surgery.
I was given a gift in Ohio, one I won’t ever take for granted. I met two of the most amazing people ever, along with experienced medical practitioners who truly invested, validated and confirmed what I had thought all along. It was wonderful to finally be “heard” and taken seriously and be told that I was right. S and I were given a second chance at nursing.
I wish that I could say this was the end of our journey, and the rest was a piece of cake. Despite having a beautifully challenging and healing week for S and I, she received two cranial-sacral treatments, one of which helped S work through birth trauma, and surgery for her posterior tongue tie and lip tie, both of which were severely impairing her ability to draw milk from me, she still needed to have a second tongue tie revision stateside three months later. We maintained tongue stretching exercises in addition to suck training to help her re-learn how to use her tongue efficiently, but there was still some reattachment that occurred. The second surgery was also successful and while we had a few moments where I thought nursing would be dismissed, S came around and we persevered together.
My sweet girl is two days shy of celebrating her first birthday. I am feeling incredibly grateful for the second chances we’ve been given at breastfeeding. We worked incredibly hard for this kind of outcome, and I’m continually encouraged at her progress. While I was never able to exclusively breastfeed her, I have chosen to remain incredibly thankful for the gift of a healthy baby girl who is able to enjoy breastfeeding as much as I do. She consistently falls asleep nursing and is very eager and enthusiastic about breastfeeding. We have enough human milk stashed away in our deep freezer for at least six more months, with plenty more to come as needed and S is more and more eager and content to nurse multiple times a day. I am now an official LLL leader applicant and look forward to working with and encouraging mothers in their breastfeeding journeys.
