Musings of a Marfan Mom

My Resolve


Last week I had my 33 week checkup (can’t believe I’m less than a month till full term!), which did not. go. well. I brought with me a copy of birth questions/wishes. While Marfan forces me into some things, I know my limits, I know the research, and I am not going to let Marfan rule my birthing experience more than it needs to. My birth wishes only had two major requests: being allowed to walk around a bit before getting my epidural and having procedures explained to me before they’re done. Anything besides that was gravy.

However, I really wasn’t counting on my OB’s attitude. I have never seen him so instantly defensive and aggressive. The information he was giving me was not accurate, and I know that because I’ve read the American College of Gynecology’s (ACOG) VBAC guidelines. My doctor insisted I’ll have to labor laying in bed the entire time, hooked up to both external and internal monitors. I was told there is NO other way to tell if I’ve had a uterine rupture than by checking the baby’s heart rate on those monitors (not true). My doctor pulled out dead baby scare tactics. When I tried to get information on how doctors determine whether decelerations in a baby’s heart rate are problematic (seeing as they normally occur with contractions), he told me it was too complicated to explain to me.

“There are years of schooling that go into that,” he said. “It would be like me trying to explain how an EKG works to you.” Well that’s pretty funny, because I can follow along with my echocardiograms and I DO know how an EKG works. But even if I didn’t, this is MY body and MY baby and I have a right to have ALL my questions answered.

From there, I was told the hospital expects me to dilate 1.5 cm an hour after I hit 4 cm, even though this is my body’s first time laboring. Research from the last 10 years shows this is an outdated idea (it’s from the 1950s) and dilation can be much longer than that.

Our entire “discussion,” my doctor kept saying “Well YOU’RE the one who wants to VBAC. If it’s really that important to you, then you have to let the experts do what we think is best.” Never mind the experts are not even using the research from their own professional organization. Listen…I did the whole trusting blindly thing once. I had some permanent damage from that surgery. Oh, and then I did it again and ended up with an unnecessary c-section.

I decided to give my body over to my baby for 9 months. I did NOT decide to give my body over to a doctor. I deserve informed consent for each procedure, and that means to know the benefits AND risks, and then be allowed to make my OWN decision.

I also resent that every doctor I’ve spoken with this pregnancy seems to be more concerned with my uterus rupturing than my aorta dissecting. You know what the facts are? The risk of a complete uterine rupture for someone with one c-section and a low transverse scar (like me) is 0.2% – 1.5%, with many studies showing it’s less than 1%. The risk for a dissection in the descending aorta in a woman with Marfan and WITHOUT a dilated aorta is 2%: about TWICE that of a uterine rupture.

As for the rest, even ACOG says that there is no proof continuous fetal monitoring is better at detecting rupture than intermittent monitoring, and we know that moving around in early labor can help prevent a woman from stalling out.

While I was initially discouraged (ok, hopeless) after my appointment, I’m not giving up on the birth that I want. Because I’ve taken the time to get informed, I know it’s still possible. Tomorrow I am going to post my birth and postpartum plan.

Oh, and one of my friends on Twitter sent me this article about the 3 different types of decelerations that you can see on a fetal monitor and which are problematic and when. And guess what? It only took one quick read-through for me to understand it!

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  1. I agree, take the reins. Don’t let them try to scare you.


  2. Ack! I’m so sorry! That’s so not heathy to be going through right now. You should be trying to enjoy the last few weeks of your pregnancy, not dealing with medical staff too worried about hospital liability and completely ignorant and uncaring to your wishes… And, excuse me, intelligence!!

    I call BS on the rate of dilation. It’s just another scare tactic. If your body doesn’t labour according to the textbook (for any number of reasons, immobility, stress, nosey doctors), they’ll probably recommend you for a C or pump you full of oxytocin. Which is just rediculous if you feel like you can go without and have the labour you’re hoping for (barring any real complications).

    Did you end up getting a doula? I hope you have a stellar cheering squad on the day of, because these are issues that you just don’t want to deal with. Sending you good vibes and prayers!


    marfmom Reply:

    Yes, I have an amazing doula! She gave me a call yesterday so we could talk through everything and come up with a birth plan. I know between her and my husband I will have a great support system. My goal for the next few weeks is to work harder on my hypno cds so i can try to remain calm at the hospital evening if they keep pulling stuff on me there, since stress can half labor.


  3. Ugh. There are few things worse than a doctor who is acting like the boss of your body. Not that you need any examples, but I labored ( with an internal fetal monitor) for 14 hours. I was at a 3. I got an epidural, and I was holding my baby less than an hour later. Our bodies are unpredictable, and able to bear much more than doctors care to admit. You are a woman; your body was designed to labor and birth. Good luck convincing everyone of that!!


    marfmom Reply:

    Speaking of your birth experience, don’t forget I’m collecting them to post while I am on “blog maternity leave” if you want to submit yours :)


    Abbey Reply:

    Yes! I’m planning on it! :)


  4. Stay strong. I did everything the dr told me w my daughter–and nearly lost my daughter because of it. When I had my son, I used a midwife. Some drs are too hard-headed to listen to the patient…I know, we didn’t go to medical school–we didn’t go to nursing school–some of us dropped out because of the scare tactics were we being taught–oh my…silly us, little non-meds that we are, how can we ever expect to learn anything? Funny–I think the drs should be required to take classes in medical advancements–and maybe some human interaction and communications classes as well…
    Stay strong–you are doing what is best for you and for your baby–never let go of that fact…


  5. ugh I am so sorry. That is really frustrating to not feel well supported by a provider. It sounds like he had a lot of attitude and you were well informed. It sounds like you are setting yourself up for the best situation. Keep getting informed and stick to it! Here’s some rah-rah from the bloggy sidelines!


  6. It’s really not too late to change docs… can you ask around or call ICAN to get a dr that is actually supportive, or at least not a bully?

    Best of luck…


    marfmom Reply:

    Thanks, but I need to birth at a hospital that can handle a Marfan patient, and the only other one capable is close to 3 hours away in traffic :-/


  7. Oh I see; I’m sorry… you sound strong in dealing with them. Confidence & good support will be key :).

    Blessings to you!


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