Autoimmune Disease, Pregnancy and Neonatal Lupus: What Would You Do?

I have an autoimmune condition called Sjogren’s Syndrome. For those of you who don’t know, autoimmune disorders are defined as those in which the body mistakes some part of itself as an illness, and essentially attacks itself. Lupus, rheumatoid arthritis, Hashimoto’s – these are all autoimmune diseases. Sjogren’s is a weird one that I was diagnosed with some years ago. Although the symptoms can vary from patient to patient, its primary feature is that it causes dryness, especially of the mouth and eyes.

I was told by the rheumatology practice that diagnosed me that I would likely need to see them at least twice a year for the rest of my life. Because although the outlook for most Sjogren’s patients is very good, if left unmonitored it can also cause, you know, organ failure. Ack! Well, I did some research and decided that if I felt good, and there was nothing disturbing in my bloodwork, it was probably safe to skip some of those regular visits. I remember talking to the APRN and she agreed that as long as my antibody levels were being monitored regularly, regular visits on the calendar were less necessary than simply remembering to be aware of the condition and to call if anything was wrong.

I actually wasn't aware that this month was Autoimmune Diseases Awareness Month!

Another thing I remember her saying was “Let us know if you get pregnant.” So, in 2009, when I was feeling ok but did in fact become pregnant, I made that call. There was some back and forth about which herbal remedies I could continue, whether I should take baby aspirin to reduce the risk of miscarriage, etc., but my questions were answered by the staff who called me back, and I am certain that no one told me to come in for an appointment.

Flash forward to this pregnancy, 3 years later. I haven’t gone back to the doctor because I didn’t feel it was necessary – until now. I have generally felt crappy and my midwife thought it would be good to have the rheumatologist look at some new bloodwork. So I did that. I expected to be lectured a bit for not coming in sooner.

I was not expecting to be told that pregnant women with heightened levels of Ro antibody — like myself — are potentially at risk of having a baby with a heart blockage caused by a condition referred to as neonatal lupus. I also was not expecting to be told that when I was first pregnant, I should have seen a neonatologist for an echocardiogram to determine whether a blockage could be found in the baby’s heart, sometime between 16 and 18 weeks, so that treatment could begin.

What happens if the heart block is left untreated? I’m not feeling all that creative so I will quote from the link above: “The prognosis for the child with heart block is generally good. Still, the heart block is permanent, and in some cases the condition is fatal. In the author’s experience with 113 such children, 22 (19 percent) died. The majority of the deaths were very early in life when the infants were less than 3 months old.”

My doctor actually apologized to me for the fact that his staff had not alerted me to make an appointment to discuss this when I was first pregnant. However, he noted that the risk that the baby will have a heart block actually drops after a first pregnancy with no such consequence. At this point, I am 31 weeks into my second pregnancy, and chances are that everything is fine, but it is up to me to decide whether to do the screening this time around.

For reasons that are not all that interesting to go into here, there was some back and forth over whether I should go to Yale or UConn for the screening, and I ended up with the number for the UConn High Risk people and calling today. Well, it seems they won’t let patients schedule appointments directly, and my OB has to do it. Except in my case, I don’t have an OB but a homebirth midwife. Will they let her schedule the appointment? Why did my rheumatologist just give me the number then? Is this more hassle than it’s worth?

More importantly … is the very minimal risk that something may be wrong worth the agony of learning about it … only to find out, possibly, that I’m too far into this pregnancy to do anything about it?

The words I just typed kind of make me sick. Whenever I bring this up to someone, I start by saying cheerfully, “But the risk is so incredibly low!” But in a moment of quiet reflection, yes, I am worried. I am, in a way, grateful that I did NOT know about this issue during my first pregnancy, when I was blissfully ignorant and gave birth to a healthy, beautiful baby without fear.

So what say you, gentle reader? Yea or nay on the test? I am leaning toward getting it, for what I’m SURE will be the relief that nothing is wrong, just like statistics say. What would you do if you were me?

13 thoughts on “Autoimmune Disease, Pregnancy and Neonatal Lupus: What Would You Do?

  1. I came across your blog when I was google-ing “sjogrens risk with 2nd pregnancy”. I was diagnosed with Sjogrens in 2003. Had my son in 2008. During my prenancy, I saw a perinatologist, pediatric cardiologist and OB/GYN. My son, thankfully, was healthy. I remembered 4 years ago – being told that if your first child is born healthy, without fetal heart block, that here is a 99% chance your second child will not be born with it either. We’ve recently started trying to get pregnant (with one very early first trimester miscarriage) and of course, I still worry.
    I will get the testing done, because I want to be as prepared as possible if our next child does have fetal heart block and what can be done about it – if it’s treatable with meds or a pacemaker or if it’s not treatable at all. At least I’d know, so we can prepare.
    That being said, should we even try for another baby? We were blessed with a healthy boy who’s the light of our lives. Am I being selfish in wanting another child??
    This post you did was 2 months ago – I’d be interested do know if you did do the testing and if your baby was born healthy.

    1. Danielle – if you want a second child you should go for it and not feel selfish at all. The risk is so incredibly low that I don’t think it should be a reason to not try for another, especially since a complete as opposed to partial heart block is so rare. So I did end up deciding NOT to test, but instead my midwife ordered a late-term ultrasound and did quite a bit of listening to the baby’s heart with the doppler. Not the ideal way to monitor for this kind of thing, but it was something, and nothing abnormal was revealed as I neared my due date. I had my homebirth and we welcomed baby girl Aurelia into our lives on May 31. Sadly, I did post an update on this blog, but it got eaten by the interwebs somehow, along with the nice comments that went with it … I wish we could find a way to retrieve it! Thanks for reading and for checking in on me … and good luck with your next pregnancy!

  2. I would definitely take the test. I also think you should talk to your doctor about being on Plaquenil while pregnant. There are many studies showing that you have healthier babies when you are on this medicine. I was unfortunately in the 2% and was not taking Plaquenil for my Sjogren’s (studies came out later). My second child (first one was fine) ended up having hydrocephalus, which is very uncommon manifestation of neonatal lupus and required brain surgery when he was 4 months old for insertion of a VP shunt. Most folks think it is just potential heart problems. The good news and what you should focus on is that my boy is doing wonderfully and is a happy, healthy 4 year old, although he has a permanent shunt implanted in his brain to drain cerebral fluid. Also, there are preventative measures including taking Plaquenil. Best of luck and try not to worry. Most mothers do fine and don’t have complications. I was the exception.

    1. Ali, thanks for sharing your story; I can’t imagine how awful that was to go through, so glad he is healthy and happy. Yes, all the focus seems to be on the heart problems and not the other possibilities – I wasn’t even aware of this issue. I’ll definitely ask about the Plaquenil.

  3. Personally…I’d have the test. I had a “to test or not to test” moment in my first pregnancy when I had a concerning result on the quad screen blood test. I had to decide if I wouldhave amnio or not. Like you, I weighed the risks of testing with what significance the results would have on my life (even if it came back as Downs Syndrome would that actually change things? No. So…was it worth the risk, stress and hassle of the test?) and decided I needed to know definitively. I had a 1 in 98 chance of having a baby with Downs, and like your well-meaning friends, many of mine said “well it’s a 97 out of 98 chance that the baby is totally fine!”. True, but if it’s all you think about and is causing you unnecessary stress….then have it, know for certain that all is fine, and be at peace. Good luck with whatever decision you make!!

  4. Im sorry that u are dealing with this. I agree with other responders I would get the testing because then if there is an issue ur baby can be followed by a neonatal cardiologist and prep for any interventions required at birth will be in place. And you’ll be ahead of the game with any follow up. I wouldn’t want to be scrambling to try and find the right dr after you’ve just given birth. Best wishes either way u decide.

  5. This is a tough one ~ so sorry you’re having to deal with this right now. ((HUGS)) As a fellow homebirther, I’m one who leans toward the least interference/intervention. But I had some complications my last pregnancy that led me down different avenues/thought processes.

    I would say that if you feel like you’re going to worry the rest of the pregnancy, go ahead and take the test. If you honestly feel you can go on happily without it, skip it.

    Which decision brings you RELIEF? That’s the one I’d take. Love to you as you process this.

  6. I would go for it do if god forbid anything was wrong that docs could be prepared. You need to know so you will have no problems with a home birth. Let’s be realistic too, you know you will be stressed the rest of your pregnancy wondering what if.
    It wouldn’t change me having the baby but to know will help alleviate anxiety, and stress and prep you for anything to come. Good luck and remember to always go to the doctor! Would you tell your adorable doctor to wait for a test like this or to not watch her health religiously?! Keep us posted sexy momma!

  7. Wow this is tough. I’m sorry you’re going through this Mel.

    If it was me, I would probably get the test because I tend to have high anxiety. When you find out everything is OK, you’ll feel so much better and will be able to go into the birth empowered and not scared.

    If you find out that something is wrong, at least you will know and you’ll know that the baby will need treatment right away (right?). I am 100% sure nothing is wrong – but again, if you find out there is something going on, you can create an action plan moving forward.

    Thinking of you!

  8. I would get the test and end the wondering. Otherwise, if you are anything like me, you are going to drive yourself crazy with worry for the next nine weeks and continue to search online for information that you really don’t need because all you really need is to know that your baby is fine. Good luck and by the way, how frightening that nobody brought this to your attention the first time around? That can’t be the standard of care…

Share Some Comment Love

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s