The Anti-SSA Antibody and Navigating Sjögren’s in Pregnancy

I’ve always wanted children. I found out that I had the Anti-SSA antibody when I received my official diagnosis of Sjögren’s. I was just 28 years old at the time. Thankfully, my rheumatologist was very thorough in his testing and I was able to learn more about what this would mean for my health and my ability to have a baby.

Sjögren’s in pregnancy can be very challenging and stressful and, frankly, I do not see enough information out there for patients about pregnancy. It’s alarming given that over 4 million people suffer from Sjogren’s and 9 in 10 of patients are women.

I always knew that pregnancy would be challenging for me and that I would be at high risk for a number of odd and unrelated reasons — one being that I live with a congenital uterine anomaly. When we started trying to conceive, I was terrified. I had already been told by an infertility specialist that I had a much higher risk (30%) of miscarriage. They said I would likely miscarry 5-6 times before an embryo took because it couldn’t receive enough blood to attach to the wall of the uterus and grow. With the Anti-SSA antibody, there is a higher risk of congenital fetal heart block. People with Sjögren’s can have a difficult time conceiving or carrying to term because of this risk.

I was excited and nervous to discover that I was 5 weeks along in March 2018. I had a difficult time waiting for our first ultrasound. I was paranoid about losing the baby before we even made it to our appointment. When I was finally able to see my baby at 7 and a half weeks, I cried.

Then we made it to the second trimester. The doctors told me I shouldn’t say anything to anyone until I was 18 weeks along, simply because there was such a higher chance of losing our baby. I decided against this advice from the doctors and shared it at 13 weeks instead. I figured if I was going to experience such tremendous loss, I wanted all the support I could get from our families and friends.

My doctors explained to me that most babies are viable when they reach 24 weeks; however, this was not the case for us. We were told our son wouldn’t be viable until week 28 and then he would need to make it to week 32 and demonstrate that he had a strong heartbeat. There were so many doctors’ visits throughout my pregnancy, often on a weekly basis. I had constant blood work and echocardiograms among other tests. I won’t lie. Throughout my pregnancy, a part of me was scared of becoming so attached to someone I could potentially lose at any moment. This feeling only intensified when my best friend died two months before our son was born.

My rheumatologist did warn me that some symptoms can worsen during pregnancy and especially after delivery. In some ways, being pregnant with Sjögren’s was much easier on my body. For 9 months I had no blepharitis or flare-ups with mouth sores that would make it difficult to eat or swallow. Going to the Pilates studio three times a week helped keep my joints stable as my body produced relaxin.

The fatigue was the easiest symptom to manage. Before pregnancy, I was a regular napper in the early evenings after work. With chronic fatigue in pregnancy, I would take two naps a day, even after sleeping a minimum of 8 hours a night. I still follow the “sleep when the baby sleeps” rule as often as I’m able. It’s honestly the only way I’m able to function as a human being on any given day.

In the second trimester, I dislocated a rib. Then I got two UTIs, which grew into a supposed kidney infection that put me in the hospital at 24 weeks. I say supposed because we will never know for sure if it was simply a kidney stone I was passing or if I had an infection, as the hospital neglected to data on a culture from my urine test.

My husband kindly held my barf bag for hours while I kept vomiting from the intense pain I felt in my side. Eventually, I was able to fall asleep while listening to my son’s heartbeat on the monitor. I can still hear the tick-tock of his heart whirring on that machine.

Then I began passing kidney stones. They put me on antibiotics for the last 3-4 months of my pregnancy to ensure I wouldn’t go into preterm labor because of the “multiple infections.” And it wasn’t until 7 months postpartum that I learned it wasn’t just pregnancy that was a problem, that Sjögren‘s was also wreaking havoc on my kidneys. Pregnancy had taken its own toll and now there was an underlying problem with my kidneys. One might say that pregnancy exacerbated these issues, but sadly we’ll never know because it’s not like they study pregnant women, let alone pregnant women with diseases.

In my last two weeks of pregnancy (weeks 38 and 39) I developed my first case of plantar fasciitis. Of course, this only worsened after delivery and it took several months postpartum before my feet had fully recovered.

Pregnancy is hard on any woman’s body. Living with Sjögren’s can be hard. Pregnancy with Sjögren’s has its own additional challenges. If you’ve found my blog, I hope this post has reassured you that you are not alone and it is possible to have a baby, no matter how challenging that pregnancy can or will be.

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