Pregnancy in Marfan

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 and my OB has expressed a willingness to talk with any pregnant/soon-to-be-pregnant Marf woman. Email me at marfmom@gmail.com for his information or for copies of the papers I cite.

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 is still ok, just with an increased risk. 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.

Aortic monitoring throughout pregnancy is vital. It should be done at least every trimester. 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.

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8 Comments

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8 responses to “Pregnancy in Marfan

  1. How did you ensure you didn’t pass marfan on to your child? Any good links/resources on that process?

  2. this is really a nice blog full of very information which is too helpful for the people.

  3. Other than medications, diet is also very helpful during pregnancy. My aunt had her daughter with a dilated aorta without taking medications… this was about 22 years ago. There were many other factors as well. And she did spend the last three months or so bed ridden, under close care of her cardiologist.

  4. Pingback: Delivery in Marfan « Musings of a Marfan Mom

  5. Hi Maya…

    I went to an OB this morning because my husband and I have decided to work out for a baby (I just got married 3 months ago) has given me Ova-Mit to take on the 3rd day of my period to stimulate ovulation. I’m wondering if you’ve heard about the med and if it will do anything bad to my Marfan body. I’ve googled it already butthere isnt much info about it, and the only ones i found arent so ..good. I just want to be fully aware of these things because right now, there isn’t anyone around me that could help me better but myself.

  6. I already “follow” you on facebook but hadn’t actually visited your website until now.
    I’m pregnant and with Marfan and scared because so far most of the doctors haven’t really made me feel safe.
    The first obgyn I went to screamed at me “didn’t anyone ever tell you that you’re not supposed to get pregnant when you have Marfan??” Well, actually no, no one did…and my mom comes to mind immediatey, she had 3 kids and she also had Marfan’s.
    Then the second one I went to told me, basicly, EVERYTHING is going to go wrong, and if it doesn’t…well, let’s just see if THAT happens.
    Now I know there are risks associated, of course, but up until now I haven’t had any health issues, my aorta has been monitored yearly and it’s root is under 4.0…and I don’t know how helpful it is to reduce me to tears and to almost a panic attack when, really, I’m already pregnant, we’ll just have to deal with it the right way now…Every single day I think I’m going to die or the baby’s going to die or EVERYONE’S going to die…
    Finally, the cardiologist was much cooler, told me that now that the baby’s on the way we’re just gonna make sure it has the best “stay” while in my belly and comes into this world safely and healthily.
    Still, as usual, the worst case scenarios are the ones that stick and as such, every day there’s some part of me that’s horrified about “what I’m doing”….
    I’m sorry about the long post, I’m just relieved to have someone “listening”

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