Welcome to Fearless Formula Feeder Fridays, a weekly guest post feature that strives to build a supportive community of parents united through our common experiences, open minds, and frustration with the breast-vs-bottle bullying and bullcrap.
Happy Friday, everyone! This FFF Friday tale comes from Kira, who has Sjogren’s Syndrome. Interestingly, this is the same condition Kathyn, one of the women featured in my “Message in a Bottle” video series, found out she had after giving birth to her son. I’m glad that Kira is willing to share her story, since it seems like this is yet another of those health issues no one talks about in regards to lactation troubles.
I knew even before my first daughter was born that I might not be able to breastfeed. The evidence is (as far as I can tell) mostly anecdotal, but women of childbearing age with Sjogren’s Syndrome seem to encounter breastfeeding difficulties at a higher rate. Sjogren’s Syndrome is an autoimmune disease that attacks the moisture-producing glands in the body, rendering them basically useless. The most common targets are the salivary glands and tear ducts. But what about the milk-producing glands in the breasts? No one really knows. Nine out of ten people with Sjogren’s are women, but it generally doesn’t strike until they are past their childbearing years – usually in their 40s or 50s. I am an exception: I have had primary Sjogren’s Syndrome since I was ten years old.
To control my symptoms, I take 400mg of hydroxychloroquine every day, even during pregnancy. Hydroxychloroquine hasn’t really been studied in pregnancy, but the fact that it controls my symptoms and hopefully keeps the levels of the “bad antibodies” at bay is definitely more help than hurt. Sjogren’s Syndrome carries some risks for the baby, most notably the development of neonatal lupus and its various presentations, the most problematic being a heart block, from “bad” maternal antibodies that cross the placenta. Neonatal lupus disappears when the baby is about 6 months old, after the antibodies from the mother leave the baby’s system, but if there is a heart block present, it may be there to stay. Because of the risk of a heart block and a few other potential issues, a pregnancy for a mom with Sjogren’s is automatically classified as high-risk and requires extra monitoring by a perinatologist. We have been very fortunate that our daughter has a perfectly healthy heart, although she did develop a mild skin rash from neonatal lupus that disappeared when she was around five months old. Our second daughter is currently baking (due in March 2011) and her heart looks great so far too, so we are thankful for that.
Anyway, back to breastfeeding. I was delivering in a Baby-Friendly hospital, which I knew would help, and I was prepared to do whatever I could to enable breastfeeding. I got a preemptive script for Reglan, and started taking it the day that my daughter was born. I put her on the breast every 2 hours religiously and pumped every two hours with the hospital-grade pump. My daughter wasn’t the best nurser early on – she was born at exactly 38 weeks and although she was quite healthy she was a tad lazy in that department. Lactation consultants visited and were somewhat helpful although dismissive of my nagging concerns that my daughter wasn’t getting anything out of her efforts. Pumping yielded a few drops each time. I was told that this was normal and that my milk would soon come in.
Per hospital protocol, the nurses tested my daughter’s blood glucose levels and found, the first time, that they were barely passable. They next time they tested, her levels had dropped below a certain threshold and the nurses fitted her with an NG tube for syringe supplementation. After she would nurse, I would give her 10-20ml of formula just to keep her blood sugar up. Her levels stabilized, and they removed the NG tube when we left the hospital, but I was instructed to continue syringe supplementation until my milk came in.
At home, I continued with the intense nursing/pumping schedule, and also continued the Reglan. I can’t even begin to describe what a mess I was. My daughter wasn’t a terribly fussy baby, but she wasn’t sleeping very well at all, and I was getting next to no sleep since I was pumping and nursing so frequently. I also noticed after a few days that I had started to feel a bit crazy – maybe it was the lack of sleep, but I was worried that it was the Reglan, because my reactions to drugs tend to be in the form of panic/anxiety. I was still getting mere drops from pumping. I still hadn’t experienced any engorgement or breast changes.
We had to take my daughter for a weight check a few days after we got home from the hospital due to all of the blood glucose issues and her dropping weight. I don’t remember how much weight she had lost from birth at the first check, but it was significant. Her pediatrician asked me if my milk had come in yet. I remember that day that my breasts felt sort of tingly, almost like they might be gearing up to do something, so I told him that it hadn’t yet but I was hopeful it would happen soon.
After the mild tingling sensation, my pumping sessions increased from drops to about 5-10ml per session. I guess that was my version of engorgement! I talked to a few lactation consultants and a La Leche League leader, and they all said that I should just keep trying, that my body was just taking a bit longer than usual, and that up to 8-10 days was still technically “normal.” I told them about my disease and the effect that it might have on my ability to breastfeed, but they seemed convinced that every woman can breastfeed if she just tries hard enough.
We took my daughter back to her pediatrician for another weight check when she was a week old. I do remember exactly how much weight she had lost by that point – she was down to 6lbs 1oz from her birth weight of 7lb 3oz. The pediatrician asked me again about my milk coming in. It still hadn’t – or maybe it had? – but at any rate my daughter was getting basically nothing but the formula via syringe and her weight reflected that sad reality.
I was so tired. Completely exhausted. I was very upset about my daughter’s weight loss and the implications – I had been starving her, even though I knew it wasn’t really my fault, as I had been trying harder than anyone should ever have to try to breastfeed. Even though I had known that there was a possibility that my breasts wouldn’t produce enough milk, or maybe even any milk at all, I was woefully uneducated about other options because I didn’t believe (and neither did anyone else to whom I had reached out to for help) that breastfeeding just doesn’t work out sometimes.
We left the ped’s office and I knew that I was done – I had accepted that I could pump 24 hours a day and it wouldn’t make a difference, and my daughter needed to eat SOMETHING. But I called the LLL leader one more time and she suggested an SNS, just to keep my nipples stimulated and hopefully get me on the road to milk production. I thought about it for a bit, and realized that I was simply too tired to try any longer. What was the point? I stopped the grueling nursing/pumping schedule. My breasts never made a peep.
My daughter was exclusively formula-fed starting at day 8. I did deal with some pitying glances and comments from people who didn’t know the whole story, but overall, I had support, especially from my mom, even though she exclusively breastfed both me and my brother before it was “cool.” It would irritate me when people would say things like “well, at least she got colostrum from you” or “well, some breastmilk is better than none” because honestly, I don’t think she got anything measurable from me at all, and I would have much rather she been happily formula-fed from day one.
Looking back, I think that for me and my health issues (and medication) that formula feeding is truly the best choice for our family. My husband brought that up a few weeks after we made the choice to stop trying with the breastfeeding and I think he is 100% correct. He and our other extended family members love the opportunity to participate in feeding and it gives me a break and provides me with additional sleep. Plus, pumping is the single most exhausting thing that I have ever done, and sleep deprivation and exhaustion is the most effective way to get my disease into an active flare.
We are planning to start our new daughter on formula from day one. If my milk comes in with any measurable amount, great, maybe I will pump – maybe. Our first daughter did so well with formula that I really don’t see a reason to put myself (and of course Baby Sister!) through what we went through the first time. We are so fortunate to live in a time and a place where a safe and healthy alternative to breastfeeding exists.
Through my experience, I have come to believe very sincerely that breast is NOT always best, and also not possible for everyone. I also do not believe that the health benefits of breastfeeding are anywhere near as significant as the headlines make them out to be. For me, it comes down to this – I don’t care how you feed your baby, as long as you are feeding your baby! I am hopeful that there will be more research done about the myriad of causes behind a woman’s ability or inability to produce breastmilk and that we will all, someday, be better-informed and more supportive of each other as moms who are in this together.
Want to get something off your chest? (Pun fully intended.) Email me at firstname.lastname@example.org and share your story for the FFF Friday series.