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?