The Breastfeeding Chronicles: No One Told Me What Nursing With Grave's Disease Would Be Like

08/08/2013 03:17 pm ET | Updated Aug 08, 2013
Kristen H.

Kristen, 43, is a professor and mother of three who, like a true academic, inhaled every bit of information she could find on breastfeeding and its benefits before giving birth to her first daughter in 2006, and twins three years later. But no book or doctor warned her about the challenges she would face as a result of trying to nurse with Grave's Disease, an autoimmune disorder that can lead to fatigue and metabolism changes, among other symptoms. As part of our series on real women's breastfeeding experiences, Kristen tells us about what she sees as the holes in breastfeeding literature, and what it was like to have her first big breakthrough as a new mom.

Nursing Prep

I read like crazy before I had a baby. I knew about the immune benefits of breastfeeding, and I was 100 percent on board. Most of the pro-breastfeeding literature out there stresses that lactation is a feedback loop; so, the more you feed, the more you make. Very little of it goes into detail about disruptions that might upset that feedback loop. It sounds like Alcoholics Anonymous, like, "it works if you work it." So I went in thinking, OK, it's going to work, because I'm going to work it.

I have Grave's disease, which is a metabolic autoimmune disease. For me, it's treated by destroying the thyroid gland with radiation, which means I have to be on thyroid hormone for the rest of my life. My endocrinologist said pregnancy probably burned out what remained of my thyroid gland, so they wanted to keep me on a slightly elevated dose of hormones after I had my first daughter.

'Purple Shadows'

When I had her, my milk came in just like it was supposed to four days after. But I started trying to feed her, and everything I'd read about "let down" just wasn't happening. Milk was coming out -- when I pumped I could see it come out -- but it wasn't enough. My daughter was losing weight, and losing weight. She had these purple shadows under her eyes.

Getting Help

As soon as we got home, I went to a free clinic where you can drop in any time and see nurses who were also lactation consultants. In the first two months, I probably went at least once a week. They had me try all the things you hear -- fenugreek [a plant whose seeds are used to make medicine that can promote milk flow], drinking plenty of water, eating plenty, all of which was supposed to help with the milk supply, but it just wasn't. My daughter wasn't getting enough to eat.

Within the first two weeks, I started supplementing with formula, but I felt terrible about it, like I had failed her somehow. And I loved these nurses, because their advice to me was basically, "your first job is to feed your baby." I had heard people say, "don't let anyone tell you to supplement with formula because it'll kill your milk supply!" But finally, I decided I was going to follow their advice. It was so sensible to me: My first job is to FEED. MY. BABY.

I supplemented more, and she started gaining weight, and the purple circles went away. When she was 11 weeks old, we were in a park, and I was trying to breastfeed her and she was crying. As soon as I gave her a bottle -- and I had bottles of pumped milk, as well as formula -- she was happy. I thought, forget it. I'm going to feed her by bottle. I kept pumping and storing the breast milk until she was about 9 months old.

Looking For Answers

Like a lot of academics, I became obsessed with finding an answer for why breastfeeding didn't work for me. I ordered a medical-school textbook on lactation and breastfeeding -- this giant, dense textbook. I was poring through it, looking for stuff on thyroid hormone and about two-thirds of the way through, I found a summary of research showing that when rats had excess thyroid hormone, it inhibited their letdown.

I don't know if that's what happened with me, but finding that information -- the possibility that something was going wrong in my body that made breastfeeding difficult, and that it wasn't because I didn't love my daughter enough -- was incredibly liberating. Because so much of what I'd read suggested that if breastfeeding wasn't working for me, it was because I wasn't working it. I must not care enough.

The Problem With Rhetoric

When people have another endocrine problem, like diabetes, we don't say, "if you care enough, you can will your pancreas into making enough insulin." Yet somehow lactation is the only endocrine system that we guilt women into feeling bad about not having complete control over. Don't get me wrong, ideologically I'm into anything that empowers women to have dominion over their own bodies and think that anyone who wants to try breastfeeding, should absolutely give it a go. But I also think maternal mental health is a huge predictor of childhood outcomes. I'm proud of the fact that I gave my daughter the breast milk she got, but I'm much more proud of myself for putting my mental health and my sense of humor first.

My Breakthrough

The coolest moment for me was actually when I decided to start supplementing. That was my first real parenting moment. Until then, I wasn't a mom, I was a lady with a new baby. When I made the decision to feed my new daughter at the cost of my "perfection" as a mother, that was when I became a true parent.

When my twins were born, I went right to exclusive pumping. There I was with two newborns and a toddler, and it was all somehow less stressful than the first time around, because I'd stopped putting such crazy expectations on myself, and on my body, and on what I thought it was supposed to do.

This account has been edited and condensed.

twins daugther

Kristen's twins and her eldest daughter, whom she struggled to breastfeed before opting to use supplement and, eventually, to pump exclusively.

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