Neonatal Lupus: Update

12 comments

In a previous post, I talked about how I did not learn until 31 weeks gestation that my heightened level of the Ro antibody, attributable to my autoimmune condition, carries with it a slight risk (1%-5%) that the fetus will develop neonatal lupus. Of the population of babies with neonatal lupus, an even smaller group will develop a partial or complete heart block due to the condition. Although ideally performed between 20-30 weeks, my rheumatologist recommended that I get a fetal echocardiogram from UConn Neonatology. I left it to him and my homebirth midwife to determine who should make the referral.

Now the update: Because I am in my third trimester, UConn refuses to see me unless I agree to give birth with their practice … even if they find no heart issue, and my pregnancy remains low-risk. I don’t believe that this is a precaution for my own safety or my baby’s. I believe this policy is motivated by fear that I will sue them for failure to provide prenatal care if something goes wrong anyway. And I realize that any practice I visit at this point will have the same policy. No one would be willing to just do the screening, tell me everything is ok, and then let me go on my merry way.

I also learned that a heart problem can be ascertained by routine Doppler use early in the pregnancy, usually by picking up a very low, weak heart rate (around 60 beats per minute). My baby’s heartrate has ranged from the 140’s to 150’s, consistently, when obtained with either the Doppler or ultrasound. I don’t know what the fetal echocardiogram would do differently, but it’s likely that I’m too far along (35 weeks) to even undergo the procedure now with any benefit.

Instead, I have considered my options and decided to go for a routine ultrasound with specific instructions to pay attention to the baby’s heart. My birth plans will not change unless this US turns up something suspicious. Just by having made this decision, I am incredibly relieved. Although I am still frustrated at the lack of solid, detailed information on the risks, and at the fact that UConn won’t even consult with me on the issue, I believe that this US will give us enough information to learn how to proceed.

My rheumatologist also believes that the fact that I have already had a healthy pregnancy means that my risk of developing this condition in subsequent pregnancies drops significantly. It’s the first pregnancy that medicine is unsure how to handle, so the current course of treatment is conservative in preparing for the worst but hoping for the best. I can’t imagine how agonized I would have been if I had learned about this issue as far along as 31 weeks with my first pregnancy. Would I have pursued my homebirth nonetheless, or given into fear and taken the more conservative course of action?

In researching neonatal lupus, I became aware of the many challenges that pregnant women with SLE face, including the increased risk of premature birth. Do you or someone you love struggle with lupus, Sjogren’s, or another autoimmune disease? How, if at all, has it affected your/their pregnancies or birth choices, or even the decision to become pregnant?

12 comments on “Neonatal Lupus: Update”

  1. A lot has to do with the changing technology. When I started going to the cardiologist for my echos on my heart they were the simple 2D black and white echos that to me looked like nothing at all but some how they were able to tell what was going on. In the last 10 years or so they went to color and now 3D and it really dose look like a heart and you can see all the workign valves and stuff. Recently I was actually takling to my cardiologist and we were talking about how when color 2D first came out it sucked and most actually liked the black and white better because it was much clearer. Then after a few years it got better and better and they couldn’t think of going back to black and white. Now that 3D is out, it is good but not great. They still need the 2D to see many things but he knows in a few years the 3D will be great and no one will think of using 2D anymore.

  2. Yes, Melanie. His screening came back normal. I still had non-stress tests twice a week until birth, but he was fine. Hopefully it’s something they can do for you. Perhaps like some others have said, a different neonatal echocardiologist will accept your birth plan and perform the test for you without going other means, but maybe the level 3 ultrasound could help.

    1. A level 3 ultrasound and echocardiogram are basically the same thing. They use the same equipment just pay more attention to the heart. They watch the blood flow, do different measurments, and things like that. I had to go to UConn for two visits. First around 25 weeks for the level 3 ultrasound where they looked at the entire baby, did all different measurments, and ended with a quick look at the heart. The echo didn’t come till around 30 weeks or so (they can’t do it till then because the heart needs to develope more to get a clear view). That time they did basically the same things as the first visit but took more pictures of the heart and measurments of the heart itself.

      One thing I learned from all of these is that sometimes they see stuff that is either just not there but the utlrasound picks up shadows or is there but means nothing. When I went for the second appoitment at UConn, they told me they saw calcium deposits in my daughters heart but not to worry they are normal. They looked like little pieces of sand in her heart. I asked questions about it but they just kept saying they are normal don’t worry. Well, soon as I left I was on the internet looking these up and found a lot of conflicting reports. Some said exactly that, they are normal not to worry, they usally go away or are just shadows the ulrasound is picking up. Others said they could be signs of this and that and could lead to big problems down the road. So next visit to my OBGYN I asked her about them and she was shocked they even told me they saw them. She said they are picked up many times in ultrasounds, specially they newer high tech ultrasounds. The consensus among doctors right now is that they are just things the ulrasound is picking up since they are so high tech now, they don’t think they are anything at all actually but shadows, and most doctors don’t tell patients about them because it gets them worried over nothing. If it really was somethign it would show up a lot different. I left a little better after talking with her and after having a couple more ultrasounds before my due date that showed nothing I belived her in that they really were nothing at all.

      1. Very interesting! My rheumatologist seemed to think that they should have done the echo at an earlier stage, but maybe the reality is that they look for the same thing throughout the entire pregnancy and just adjust the exact equipment and methods used as pregnancy progresses. I was confused about why one article I read online seemed to say that a simple Doppler would pick up an issue with the heart, yet also say that the more advanced monitoring methods are needed. It is also interesting to know that the technicians and doctors see “stuff” all the time but don’t routinely tell us. I’m the kind of person who would prefer more information than less, as long as I get the full explanation of how to interpret that information.

  3. I had an elevated AFP level during my pregnancy which would have been a sign of Spinal Bifida so I went to John Dempsey UCONN for a level 3 ultrasound. They checked out the spine as well as the heart. You could see colors in this ultrasound of which way the blood was pumping through the heart. Maybe you could get that instead of the echocardiogram and not have to sign off your delivery place? Not sure. Good luck, I wish you and the baby the healthiest of vibes.

    1. Thanks Erin, I assume everything checked out and baby did not have spina bifida? That must have been a relief. I will mention this kind of ultrasound when i go to the place my midwife is referring me.

  4. Sorry UConn is treating you like that. I had to go for the fetal echo because I was born with a heart condition and had a good chance of having a baby with one as well (thank god our first did not) and went to UConn but was sent much earlier. I know when I was told I had to go for the echo we were the choose of UConn, Hartford, or New Haven. My OBGYN said they are all great, it’s just whichever you want let me know and I will take care of the rest. We were also told that we didn’t have to give birth there if a condition was found, we could pick between the three as well. We went with UConn becasue it was just easier for us. But if you would still like the echo (it may give you a better peices of mind) I would try Hartford or New Haven.
    I can tell you, New Haven cardiologist are great. I was going to Hartford for my heart condition from birth till early adulthood but switched to New Haven becasue my primary care doctor recamended one there (not that hartford is not good either but he was getting worried because Hartford started to push my appoitments out more and more and he felt I needed to be seen more frequenctly). Since then I love going there. If UConn had found my daughter had a heart condition we would have switched to there.

    1. Arlene, I’m glad you had more options and that everything worked out ok. Admittedly, I haven’t tried another practice because I’m so far along at this point, but it’s good for other women with this potential issue to know about.

  5. I’m so sorry you are going through this stressful time – and it stinks that the stress is increased by UConn’s refusal to work with you. If you still wanted the echocardiogram you could always just tell them you will go with their practice and then still have the homebirth once you get the results. I know it’s not ideal, but it is a potential option. I switched to a homebirth at 40w2d because I disagreed with the OB wanting to give me a C-section, and they just made me sign out my records and indicate that I was going against their wishes.
    But it sounds like you have a great plan in place anyway – and the US will help you decide how to proceed. Thanks for sharing your experiences!

    1. Kate, I would love to hear more about your experience switching after your due date! Was it unassisted or with a midwife? I did consider just not showing up at UConn for the birth, but I ultimately decided against that option. I also wouldn’t want my midwife to experience any repercussions for her involvement in that scenario.

      1. Yeah – I completely understand and it would likely add to your stress level, which is not good! My homebirth was with a midwife – we were told on my due date (a Friday) that they wanted to do a C-section on Monday because they said my son was too big. Our hypnobirthing instructor connected us with a homebirth midwife, we met with her on Monday, and decided to do the switch. I felt so calm when I met with our midwife, so I decided to trust my instincts and am so happy I did. Was your first birth at home too? I’ll be sending you lots of good wishes for an easy, peaceful birth!!

      2. Kate – Thanks, and that is so awesome that your instructor hooked you up with someone. The natural childbirth community around here is great (assuming you did this in CT)! Unfortunately, so many OB’s are too unfamiliar and uncomfortable with natural childbirth to let a large baby be birthed naturally (and the definition of “too big” is also dubious in my opinion). So the kneejerk reaction is c-section, even if there’s nothing to prove the surgery is absolutely necessary. Yes, my first was a homebirth and we are going with the same CPM this time around. She brings a second CPM as a backup/to assist as well, and we are also having a doula.

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