Many people who know me were shocked to hear my secret longing for a baby, especially because 10-20 years ago, most doctors would advise patients like me against pregnancy. But for me, sharing my journey with RA isn’t always about the physical pain, it’s about the secret longings and dreams and life goals that become more complicated because of RA. At the time I blogged for Vectra Voice, my husband Andres and I were in a bit of a holding pattern, discussing options with my doctor. Since that time, things have changed a lot. In short order, I survived pregnancy and now am proud mom to one-year-old Santiago!
For those of you who are thinking about pregnancy with RA, I wanted to share my experience because I learned so much along the way. (Look for a future Vectra Voice post on being a mom with RA!)
For me, one of the first surprises was that because of my RA, I was considered a high-risk pregnancy. I knew I would have to take extra care during pregnancy, but I didn’t realize that my baby also would be at higher risk because of my RA. I began seeing my OB/GYN much earlier and more frequently than in a typical pregnancy. I’ll never forget that first phone call to my OB/GYN’s office after a positive at-home pregnancy test and being told to come in right away. Usually a first prenatal appointment occurs at eight weeks gestation, but because of my RA, my appointment was made the first day of my missed period. Additionally, I was referred to a genetic counselor early on and began working with a maternal-fetal specialist.
To be honest, all of this was pretty terrifying at the time. I had to be tested for certain antibodies and was confronted with the possibility that my immune system could be attacking the baby’s heart. I can’t tell you how scared I was and how much I cried. All I kept thinking was how badly I wished I had known this prior to getting pregnant. The good news is that the results came back negative, and everything was on track – Santi is a healthy baby.
As you might expect, in addition to more frequent OB/GYN appointments and appointments with the maternal-fetal specialist, I also had to see my rheumatologist much more frequently than normal. You could say that going to doctors’ appointments became a full-time job with the fringe benefit of seeing my baby on ultrasound all the time.
I was a little surprised, however, to learn that each doctor really had a different focus. Whereas my OB/GYN’s focus is on delivering a healthy baby, my rheumatologist’s focus was to keep me in the best health possible. Sometimes their advice conflicted, such as when my rheumatologist wanted me on a certain medication, but the OB/GYN wasn’t comfortable with my baby being exposed to that therapy.
Managing three doctors’ opinions was a little more distressing than I expected. The truth is, I had actually consigned myself to believing that for the duration of my pregnancy, all three doctors would decide on how to treat me unanimously, and I’d get a break from being an empowered patient. Instead, I had to make more medical decisions than ever before — even and especially when my doctors disagreed with each other.
Sometimes I decided to follow my rheumatologist’s recommendation, and at other times, I followed my OB/GYN’s recommendation. Expectant mothers without RA most often prioritize the baby when confronted with a health decision, and there is strong cultural pressure for the mother to be selfless. However, the reality for RA patients is that we can’t care for a baby – in or out of the womb – unless we care for ourselves. With each decision, I took time to weigh all aspects and aimed for the best overall outcome for both of us.
In one case, I stopped taking a medication I was on during my first trimester because my OB/GYN was worried about the effects it might have on the baby. However, I got back on during my second trimester when I felt less worried. I was really proud of that compromise, and it empowered me for other decisions ahead. I encourage anyone RA patient who is pregnant not to think of each decision as all or nothing. Sometimes it’s possible to land in the middle to do something good both for you and for your baby.
What was beautiful about the whole process – and another unexpected piece of this journey – was how empowered I felt. It was as if all I learned by advocating for myself as an RA patient was a blueprint for how to advocate for myself AND my precious baby in a different set of circumstances! Without my experience as an RA advocate, I easily could have felt bewildered, but instead, I felt strong! To this day, I am still proud of how strong I was during my pregnancy.
Vectra played a large part in all of this and was really helpful in my decision to become pregnant. It was important for my doctor and me to know that my medication was working and that it would continue to work after the break I would need to take during pregnancy. We first used Vectra to confirm that my RA inflammation was in a low range. I then took a six-month break from my medicine before going back on the same one. The purpose was to determine whether the medicine would still be effective after the break. My Vectra score after re-starting my therapy was again in a low range, which was the validation we wanted to go forward with the pregnancy
Being pregnant was a true privilege for me, with all of its surprises. I am so grateful to RA parents who forged the way, to my team of doctors who were always looking out for my baby and me, and to the love of my life and my number-one supporter who always has my back, Andres.
Stay tuned for my next blog about life as a new mom!