My Experience With a Maternal Fetal Medicine Doctor
It was such an ordeal when I got my lupus diagnosis. There was so much trial and error on the meds that I was taking for the first few years. But, we finally got a regimen going that was actually working. But, 2 of those medications were Cellcept and losartan. Both of these meds were on the "no" list. If I was on these medications I should not get pregnant since it would harm the baby.
Maternal fetal medicine doctor
I worked really closely with all of my doctors to make sure I was in good standing with my labs and every visit was good news after good news. Soon, I was able to wean off of Cellcept and losartan and was just on Plaquenil. We waited for 6 months to see how my body would react and it was still good! A few months after I got married, I finally got the green light from my rheumatologist to try and conceive. Before we even tried, I wanted to set up a preconception visit with a maternal-fetal medicine doctor also known as a high-risk OB-GYN. I wanted to get as much enough as I could.
Lupus and high-risk pregnancy
As a lupus patient, I knew I would be considered a high-risk pregnancy patient. Along with my age of 32, I knew the odds were stacked against me. So, I wanted to prep myself and my husband with all the information we could get before we even started trying. I also was having second thoughts on how to move forward. A part of me wanted to move forward and try, but another part was scared about all the what-ifs that could occur. I thought this visit would help make my choice easier.
My visit with the high-risk OB-GYN was really insightful and also emotional. I was glad my husband was there to hold my hand. I think I would have been freaking out even more if he wasn’t there. She threw out so many facts. My head felt like it was spinning a million miles an hour. I even cried at certain points. Overall, she mentioned that if my lupus was under control, the more likely I would be able to have a successful pregnancy. But, of course, there were risks that I had to be made aware of.
Since I was positive for anti-SSA/Ro and anti-SSB/La antibodies, there was an increased risk that my baby would develop a heart block. She mentioned that it was very rare, 1 to 3 percent. We would have to be monitored more carefully and perform more ultrasounds and fetal echocardiograms to check for problems with the baby’s heart. She also explained since I have lupus nephritis there was an increased risk of kidney activity along with preterm birth, miscarriages, stillbirth, preeclampsia, and intrauterine growth restriction. She also tested me for antiphospholipid antibody syndrome. If I was positive for this along with all of the above I would also be at an increased risk for the maternal venous thrombotic events. Thankfully I tested negative for this.
She also explained that some lupus patients go flare-free while others have the opposite effect. Most lupus patients also don’t make it all the way to full-term and get induced at week 39 or earlier. I also would have to deliver at a hospital with a NICU just in case any issues arise. I also asked the question about my age. She explained that there were many women who were able to have a successful pregnancy later in life, but the earlier the better. As we age, there is an increased risk for birth defects and it gets harder to conceive as we age.
If I did become pregnant, I would need to be monitored more closely and would have to work with a team of doctors to ensure the baby and I were safe. After this visit, we were still left wondering what my next steps were. We were excited and also scared at the same time. I guess only time will tell.
Have you written a letter to your local congress representative to advocate for lupus research and education funding this year?