There’s seemingly a dearth of information about pregnancy and delivery in Marfan patients and it’s a subject I get a lot of questions on. I was really lucky to happen to live in a city with an OB who specialized in Marfan and have access to one of the country’s top cardiologists during the latter half of my care (he’s now my regular cardiologist, since we moved to California). So, I’d like to share what I’ve learned from my experience, my doctors, and reading up online in a two part series. This week is Pregnancy in Marfan and next Monday come back for Delivery in Marfan.

Please keep in mind that I am not a doctor myself, and (like everything else in Marfan), what works for MOST patients may not be what’s right for YOU. Do your own research and talk with your doctors and experts! The National Marfan Foundation has resources online and in print.

Contrary to the information doctors had a generation ago, pregnancy is ok for many women with Marfan. For women with an aortic root under 4.0 cm, they are at the least amount of risk of aortic dissection (just slightly above the risk for what it would be if they weren’t pregnant). For women between 4.0 cm – 4.49 cm pregnancy can still be ok, just with an increased risk (most likely proportional to aortic size). Pregnancy is not recommended for women with an aortic root of 4.5 cm or above unless valve sparing surgery is done first (Meijboom, et. all, 2005). I can imagine that pregnancy would also not be recommended right away for someone with a rapidly growing aorta. I have not found measurements for other parts of the aorta. There is also the risk of descending aortic dissection without a pre-existing dilation of the aorta. I found out about this after I delivered Menininho and plan to ask my doctor for more information when I see him next month.

Medication should be continued during pregnancy to help prevent growth of the aorta (Elkayam, Ostrzega, Shotan, & Mehra, 1995). Not all medications are safe during pregnancy. For instance, Losartan/Cozaar is not recommended during pregnancy, particularly the first trimester, so you should talk with your doctor about moving to another medication before trying to conceive. Talk with your doctor about your particular medication. My OB monitored my baby’s heart rate at every prenatal visit because of a couple of case studies that mentioned bradycardia (slow heart rate) as a possible side effect for babies whose mothers were taking beta blockers (which I was taking at the time). However, my team also told me that since there were only two case studies it’s possible the bradycardia was not related to the medications at all but was related to the mothers having hypertension, which can cause complications on its own.

Aortic monitoring throughout pregnancy is vital. It should be done at least every trimester…every 6-8 weeks if the aorta is 4.0 cm or larger (NMF). This way potential problems can be caught early and your safest delivery can be planned. An echocardiogram is the least invasive measure, although MRIs are also considered safe. CT scans are not typically used during pregnancy because the risks posed to the baby from the radiation.

And again: The opinions offered at Musings of a Marfan Mom are for informational purposes only and are not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified healthcare provider with any questions you may have regarding Marfan syndrome and any medical condition. Never disregard professional medical advice or delay in seeking care because of something you have read here.

Citations:
Elkayam, U., Ostrzega, E., Shotan, A., & Mehra, A. (1995). Cardiovascular problems in pregnant women with the Marfan syndrome. Annals of Internal Medicine, 2, 117-122.

Meijboom, L. J., Vos, F. E., Timermans, J., Boers, G. H., Zwinderman, A. H., Mulder, B. J. M. (2005). Pregnancy and aortic root growth in the Marfan syndrome: a prospective study. European Heart Journal, 9, 914-920.