Systemic lupus erythematosus, a.k.a. lupus, is a chronic autoimmune condition that causes the immune system to attack healthy tissues and organs. It can affect the joints, skin, kidneys, blood cells, brain, heart, and lungs. Symptoms usually come in waves or flares, and then subside for a period of time. Research shows that during pregnancy, women with lupus have a higher risk of complications—that can affect both them and the fetus—including increased rates of infections, blood clots, and preeclampsia (a serious condition that causes persistent high blood pressure and potential organ damage), higher miscarriage rates after 12 weeks; fetal growth restriction; and preterm delivery. It is possible, though, to have a healthy pregnancy with lupus. Working with a high-risk ob-gyn is the best way to make sure you and the fetus are monitored throughout, and that any issues can be caught and addressed as early as possible.
Below, Kiana Cornejo, 24, shares her story about being pregnant with lupus and the challenges she has faced both during and after. Here is her story, as told to health writer Amy Marturana Winderl.
I was diagnosed with lupus when I was really young, around 11 or 12. Even then, they brought up pregnancy, and I was like, ‘Why are you talking to me about this?’ But I guess they had to have these conversations because I was on medications that could affect a baby. They did also tell me that there could be complications with pregnancy. When I started getting older, I thought about how I really did want a kid of my own one day, and that it sucked that I had to think about it in a way that a person without any medical conditions didn’t. I thought, What if I get pregnant? If my child has complications, how will I deal with that? Or what if I have complications and can’t take care of my child?
And then when I was 21, I got pregnant. My daughter wasn’t planned; it was a surprise. So when I found out I was expecting, I was like, Oh my God, what am I going to do now? I immediately called my doctor at Hospital for Special Surgery (HSS) and told him I had taken a positive pregnancy test. He told me to come into the office so that we could go over my medication regimen and see what would be safe for me to continue. Thankfully, at the time, I was on medications that were fine for me to take while pregnant. However, my doctors had to really stay on top of my bloodwork. There was one time that some of my levels came back concerning, showing certain antibodies that can signal problems with fetal heart development, but every time after that, things looked okay.
They sent me to see a high-risk doctor, who I saw throughout my pregnancy in addition to my regular ob-gyn. They were monitoring the baby and making sure that she was growing appropriately and that her heart was developing okay. And then my regular ob-gyn was making sure that I was healthy. Because he was aware of my medical condition, I had his personal phone number and he told me to call him for anything. I was put on high blood pressure medication to prevent preeclampsia, which is more common in pregnant people with lupus.
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