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Breastfeeding with Sjögren’s Syndrome: Sana’s Story

What happens when you prepare for the possibility of not producing milk and end up producing it? You refuse to let anything else stand in your way. I have an autoimmune disease called Sjögren’s Syndrome—it causes inflammation in my entire body and attacks my moisture producing glands. Due to the inflammation, I wasn’t sure if I’d be able to get pregnant, and then I got pregnant. Still couldn’t get too hopeful because of the high rate of miscarriage, but then I had a healthy baby girl. I don’t even create saliva correctly, so would I produce milk? Turns out I would. Was I ready for my baby to have a posterior tongue-tie and a clinically short tongue? Not at all.

I deal with pain on a daily basis; think of it as an arthritis-like feeling in all of my joints. Luckily for me I have a fairly high tolerance for pain, but even so the pain I was getting in my nipples in those first few weeks was still more than I could handle. I was given the advice to make sure I was airing out my nipples, but when I tried it I ended up yelping in pain. Turns out I was getting vasospasms due to the missed tongue-tie and the cold air was just making my nipples spasm more. Luckily I knew who to call.

I think that when she was born I was expecting for her to overwhelm me because I’m so often overwhelmed since I’m an anxious person. But even when I’m overwhelmed, I feel like I was always meant to be a mother. My anxiety about having another person to take care of doesn’t translate to my feelings directly to her. I don’t feel like I have the weight of the world on my shoulders just because I’m responsible for her.

When I first saw Katie we worked on some positioning, got some all-purpose nipple ointment, purchased a My Brest Friend nursing pillow, and I finally felt some relief. Unfortunately the relief didn’t last for long. I didn’t know what I was doing wrong. I was pumping and immediately feeding/having my husband feed when he was home to try to let my nipples heal. I cried. I cried about the pain, I cried about the frustration, I cried because there was nothing my husband could do to help. I cried more than I’d like to admit. After I went back to Katie, she confirmed that the tongue-tie would probably need to get snipped. While waiting for an appointment with the ENT, we tried a nipple shield—to no avail, since my daughter fell asleep after barely eating each time. At this point I was pumping and feeding so frequently that my supply started to drop. I was taking fenugreek to try to keep my supply up and just forcing myself to feed her directly, even if I cringed every time I put her on, knowing that there was a light at the end of the tunnel with her appointment with the ENT approaching.

I got her tongue clipped at five weeks, but it wasn’t until around eight weeks that I started feeling relief. I was prepared for it to take a while to feel relief as my daughter learned how to use her tongue. The doctor warned me that there was nothing that could be done about her short tongue and that it may still cause discomfort. Turns out, he was right. She’s almost four months old now and I wish I could say I’m pain free, but I’m not. What’s more, there was still another pain that no one warned me about: continued engorgement. Unlike most women who stop feeling engorged around six weeks, when I don’t take a prescription anti-inflammatory I still feel the uncomfortable stiffening within two hours of my last feeding or pumping.

This picture is my favorite part of bonding. Her being happy on the boob is nice, but seeing her passed out on my belly while she’s milk drunk wins. I can relax and enjoy her rather than worrying that she will her slide off a little and cause discomfort—and I know she’s getting comforted being able to hear my heartbeat and belly sounds that she heard in utero.

At breastfeeding support group, the general consensus is that people start to love breastfeeding between ten and 12 weeks. I still don’t love it. There are moments that I love. I love it when she’s upset and her eyes roll back in relief when she starts eating. I love it when she passes out milk drunk on my stomach afterwards because I know she’s getting the comfort of feeling my heartbeat and I don’t feel the pain of the feeding. I think it’s hilarious and ridiculous when she’s eating and burps on my boob. But I still can’t say that I love breastfeeding as a whole, and I’m not sure that I ever will. So why haven’t I given up? There are a lot of reasons. I know breast milk is what is best for her, I know the process of breastfeeding is good for development of the jaw, clearing ears, etc., and I honestly don’t know that we can afford exclusively formula feeding. I think what has kept me going the most is that I can do it. My body doesn’t work the way that I would like. I’m not even 30 yet and I often feel like I’m sharing the complaints of someone in her 60s. Since my body has come through in a big way, I feel like I’m not ready to give that up. So pain be damned, I’m going to breastfeed.