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.
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?