Musings of a Marfan Mom

31.5 Weeks


I’m now 31.5 weeks pregnant. It’s been a crazy past month, so I figured it’s time for another update. I started getting contractions somewhere around 26 weeks…I’ve lost track at this point. One day I realized I’d had them for 12 hours, so I asked Mark to take me to labor & delivery. My OB was out of town on a family emergency and the low-risk OB I saw didn’t know what to do about me since the typical tests all looked fine. He decided to just send me home, without any medication even, and told me to stay off my feet the rest of the week.

The contractions didn’t stop; the next day, 36 hours after they’d started, Mark drove me to the high-risk clinic. I talked to the nurse and insisted on seeing a high-risk resident. Long story short, I was harassed by one of the nurses (who knew NOTHING about Marfan) and again sent home. No one would contact my OB and I felt like I shouldn’t because he was out of town. My cardiologist was also gone. It took almost a week before the contractions stopped without me being flat on my back. They continued to come off and on, always painfully.

I don’t remember how many L&D/hospital trips I’ve made this pregnancy, but with each trip I’ve grown increasingly frustrated.

So, last weekend was our Marfan chapter’s annual BBQ and I had a chance to talk with my cardiologist. I laid out everything I was upset about: no real contact with high-risk OBs, general lack of Marfan knowledge, no one listening to me. For instance, why was one doctor advocating weekly Non-Stress Tests (NSTs) but not ultrasounds of my cervix to check for shortening? Why not stop the contractions with progesterone instead of risk them beginning to dilate me, since Marfan already puts me at risk for pre-term labor? I was not expecting my cardiologist’s suggestion that if I wasn’t happy, I consider switching to another OB, one he used to work with, at another hospital in another city. I had never considered that to be an option.

This week I met with my OB for the first time in over a month. I laid everything out for him (except that Mark and I have been considering changing hospitals). I appreciated his honesty, but I’m dismayed at some of the information that I got.

For starters, I will be delivered by a low-risk OB, not an MFM. MFMs do not deliver babies vaginally apparently (just scheduled c-sections). Unlike smaller hospitals, there is a full obstetric staff available 24 hours a day so I won’t have to wait for an OB or anesthesiologist to come in from home when the baby is ready to be born, so that’s great, but the MFMs do not stay at the hospital and only come in if there is a major emergency, though they are available for questions over the phone. I had been under the impression since our pre-conception appt. that when my OB had said he “probably” wouldn’t be delivering my baby, he meant there would be a 1 in 6 or 8 chance that he would; that whichever MFM was on call that night would be delivering me, NOT that the only way he would is if I scheduled a c-section with him.

He’s also insisting on me having weekly NSTs. I disagree that they’re so necessary, but I said I would go if he would first deal with the nurse who harassed me last time. I watched him take names and notes so I do trust that he’ll follow up on it. Apparently at 32 weeks cervical ultrasounds stop being so accurate but he said he’ll do manual checks at each visit from now on if I want them.

On the upside, he promised no pitocin induction for me. IF down the road I am very dilated and effaced I can elect for him to strip my membranes, which I doubt I will, but that’s it. My OB also assured me that my VBAC plans are all over my chart.

So here’s my big question. If I’m SOOOO high risk that I need an MFM, one who specializes in my genetic disorder, and I need special delivery plans with meetings with multiple specialities every trimester, then why I am I suddenly ok to deliver with any old OB at the hospital? That’s when I am MOST at risk for dissection. I do not like this. I do not trust they will believe me if I have a dissection. I know it’s a different hospital this time around, but I am still angry over how I was treated when I had Menininho, how none of the doctors or nurses listened to me when I was sick, and so I don’t trust anyone.

But, when Mark and I outlined all the costs and benefits of switching hospitals, we decided I should stay where I am. The other hospital is up to 3 hours away, depending on traffic. Since I’ve not had labor before, I have no idea how fast I might deliver and I do not want to risk being in hard labor or, heaven forbid, dissecting while stuck in traffic. Plus, it’s really far to drive for weekly appointments in general. No one at the hospital will know me or my medical history, unlike my cardiac team at Stanford, whom I trust with everything. I’d also need to get a new doula, and I really am attached to my current one.

I forsee more conversations with my OB and cardiologist in my future, really serious ones about ensuring I will be taken care of. The one upside I can think of though, is that perhaps delivering with a low-risk OB, the doc will be more flexible with when I get my epidural and IV, since it’s not like they’ve been very conservative about anything so far.

30 weeks

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  1. I really hope you can navigate this and have Smudge’s birth the way you want it! I’m sorry you are facing so much frustration … I’m at the stage where I’m getting weekly internals now too… and my OB says that it’s the most accurate way to keep on top of things too… 35 weeks and already dilating and thinning so I doubt I’m making it to my due date… hopefully you can make it several more weeks!


    Liz Reply:

    a)You can refuse any procedure including internals. b) Your OB is either lying or an idiot. There isn’t a single study out there which shows internals do anything except increase your risk of infection and the risk of the dr. doing unnecessary procedures (usually stripping membranes)without consent. Internal exams show NOTHING except where you are right that instant. The stories of women who were told they were nowhere near labour & had their babies within hours & the stories of women who were told very soon/any day now & went weeks longer number in the thousands/10’s of thousands. Internal exams at the end of pregnancy are completely utterly useless and any OB who doesn’t know that needs to get out of profession. And one who does know & lies to a patient so spectacularly should also get out.


    marfmom Reply:

    Yes, it’s true that internals are only going to show where I am at that instant, same as an ultrasound would. But, prior to full term they’d let me know if I’m dilating early and it seems to me that would be good information to have, since I’m at risk. If I’m dilating a lot I’d want to try bed rest, although I realize that hasn’t been proven to help, either. I don’t plan on getting internal exams regularly after I reach full term because I don’t want pressure for an induction.


  2. So many decisions. Looks like you’re asking all the right questions. Best of luck with your pregnancy and soon delivery.


  3. Wow! I’d be confused too. I know with my daughter, they allowed a resident on MFM rotation to deliver her (luckily it just happened to be the one who saw her almost the whole way through at our primary hospital) but the MFM specialist was right there over her shoulder in case she got into trouble. Granted her circumstances were somewhat different but still…

    Have you talked to anyone at the NMF office? I was thinking Amy Kaplan, the information and resource center manager might be helpful since she is plugged in with alot of the medical folks & is a RN herself. She is at ext 26.

    Hang in there & we are keeping you in our thoughts.


    marfmom Reply:

    The issue is that the PAB hasn’t put out a solid standard of care for pregnant women with Marfan in a long time. There’s nothing to say that it SHOULD be an MFM involved in our care at all. (Although I think it would make sense to most of us that an MFM be involved, given that Marfan does bring the obstetric risks of organ prolapse and premature labor.) I’ve done a lot of reading and discussed what I’ve come across with multiple people over at the NMF, as well as some PAB members, so unfortunately, I don’t think there’s anything new they could tell me except to switch hospitals if I don’t feel comfortable with mine. I see my cardiologist in a few weeks though, so I’m going to bring up my concerns with him then and see what he might have to say.


  4. Oh boy…
    I think all things considered you are probably better off where you are simply because of the possible 3 hr commute. A lot can happen in 3 hours and that would be very scary to me as a Marf in labor.

    I think it is bizarre that your MFMs won’t do vaginal births. Ours do – not many. They have something like a 75% c-section rate but they DO them. Guess it’s just a different policy.

    It does scare me that you are going to be getting the “luck of the draw” with who delivers you. Some may freak out that you have this “freaky” genetic condition they don’t know much about and push intervention…

    I know this is a tough decision. I’m pulling for you.

    Cute belly!!!


  5. pat smudge for us. saying lots of prayers.


  6. Ugh, how frustrating… the worst part of it, that feeling of not being listened to. Good luck to you, I hope labor is different for you this time and that they do wise up and pay attention to what you have to say.


  7. I’m praying that you have the delivery that you want and the delivery that Smudge deserves. You’ve given me a new appreciation for dealing with doctors and such. I’m so awed by your determination to ensure that you and Smudge both receive excellent health care. :)

    Kristi, Live and Love…Out Loud


  8. You look great! I wouldn’t want to switch hospitals that far away either. I would ask about the chances of an MFM getting there quickly in an emergency. Not the same thing but when I was having Myles prematurely, they made sure the pediatrician was IN THE ROOM when I delivered. It was his day off and he had other doctors on call. But he came because he knew he was the best! There is no reason they can’t call an MFM to be in the hospital while you are in labor.


  9. Oooh what a cute pregnant picture! (And I hope you get all the delivery stuff sorted out. It sounds incredibly frustrating.)


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