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What I was told about lupus and pregnancy

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My lupus was fairly stable for about a year and a half before I got pregnant, so I am able to see a specialty OB, (one level above a normal OB) but do not have to go to the maternal fetal medicine doctor (the highest specialty level) on a regular basis. In the University of Minnesota system, all lupus patients who are pregnant see the maternal fetal medicine doctor at least once during their pregnancy. I had my appointment at 19 weeks. This is the appointment I was probably most nervous about. It’s where they talk to you about all the risks and what could happen, what might happen, what they do if something does come up. They then develop a plan and work closely with the OB throughout the rest of the pregnancy. Here’s a summary of what they told me.

It is recommended to have your lupus under control for at least year before trying to conceive. They stressed the importance of this. If your lupus is active, it can affect not only you, but also the baby. Makes sense.

There are also a couple of tests they do before you start trying. There is an antiphospholipid test. If that doesn’t come back normal, you are at an increased risk for miscarriage (even more than just having lupus).  Thankfully, mine was normal. There are also a couple of antibodies they test and if those come back normal, the baby is at a higher risk for a heart defect. Again, mine were normal so I didn’t get all the details.

Going into this pregnancy, I had all things going for me. Normal antiphospholipid levels and antibodies and my lupus had been under control. It really was the best time for us.

Now that I am pregnant they talk about things that can happen during pregnancy. They worry about the growth of the baby. With autoimmune diseases, the baby doesn’t always keep up with growth. This means you go in for a lot of growth ultrasounds. Last I heard, my baby was in the 60th percentile for growth. So far so good!

Just by having lupus, I am also at high risk for preterm labor. I don’t remember all the details but they said something about the connection with the placenta (I know, very detailed).

I also have past kidney disease with my lupus so they are watching my kidneys very closely. Being pregnant can put extra pressure on your kidneys (and other organs as well). Monthly kidney labs along with periodic 24-hour urine tests are done.

Lupus patients are also at a very high risk of developing preeclampsia and the only treatment for preeclampsia is delivering the baby. The problem with me having past kidney involvement is that the labs that they look at for my kidneys are the same labs that they look at for preeclampsia. They check protein levels in your urine and watch swelling. Luckily (and I can’t always say luckily with this) I have nine years of labs to show how my labs change in different situations.

As I was told, once you hit 25 weeks, the baby has a chance of surviving outside of the womb. Before that, they can’t really do much to save the baby. But at 25 weeks, they attempt to resuscitate the baby upon birth. They said they are confident in their NICU at 25 weeks. I have passed that milestone and am currently 26 weeks. 28 weeks is another big milestone. They told me that their goal is to get me to 37 weeks.

As for doctor appointments, I will be there a lot. Starting at 24 weeks, they do a growth ultrasound every four weeks. Then at 28 weeks, they start doing a BPP ultrasound every week, in addition to the growth ultrasound. Then at 32 weeks they do a BPP ultrasound two times a week. It’s a lot of information and a little overwhelming to be pregnant with lupus. It involves a lot of appointments, but at least I know they are watching everything they need to be. I know in the end, it will be worth it.


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