Musings of a Marfan Mom

Thoughts on an ICAN Meeting


Last Tuesday evening I took a big step in preparing for Smudge’s birth by attending my first ICAN meeting. The International Cesarean Awareness Network, or ICAN, is a non-profit devoted to improving maternal-child health by preventing unnecessary cesareans through education, providing support for cesarean recovery, and promoting Vaginal Birth After Cesarean (VBAC). You can find out more about them here.

ICAN offers support groups for women who have had difficult c-sections in the past. My friend Emily runs one where she lives and recommended that I go check out a meeting close to me. I was really hesitant for a while…I didn’t want to walk into a situation where 1) all the other women hated all doctors/hospitals or 2) I’d be given a hard time for not planning a drug-free VBAC.

I tried to tell myself for a long time that my c-section was necessary. It’s not true. The medical record actually marks it as elective. My orthopedist here casually mentioned the epidural isn’t even really near the dura sac, unless the doctor putting it in really messes it up, and that a caudal is an option that eliminates that concern. I feel as though the anesthesiology team simply didn’t want to assume any liability for having a high risk patient (they were scared of my dural ectasia) and in covering themselves put me in the position of having a surgery not recommended for women with my aortic size, which led to complications. I think that that alone I could move on from, but they kept me away from my baby for no reason. They refused to perform tests necessary for my health and refused to give me information about what was wrong with me. They mocked me.

I still have bad dreams, over 18 months later, about my time in the hospital with Menininho. As I’ve prepared for Smudge’s birth I realized that I am so stressed and frightened over a repeat of what happened before that I can’t fully embrace my preparation. I need to be able to let it go.

So, I very nervously attended my first ICAN meeting. It wasn’t at all what I had expected or feared! The women there each briefly introduced themselves and why they were coming, but there were no drawn out stories. This month’s speaker was a therapist who specializes in birth issues. A lot of the background info on therapy that she gave I already knew from my BA in psych, but some of what she said really resonated with me. She talked about how fear of having the baby taken away can delay labor, and how stress in general slows down the beginning and progression of labor. Like cats, who hide to birth, our bodies are designed to birth when we are most comfortable. I think what I am most afraid of is being separated from Smudge like I was for Menininho, and not knowing what is happening to him or having any control over it.

I’m really glad that I went to the meeting and I’d encourage any other women who have issues with their c-sections to check out one as well. I’m already looking forward to next month’s!

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  1. my biggest fear with Liam was having a c-section … and I was fortunate not to need one, but it weighs heavily in my mind as I enter my 3rd trimester again.. good luck with getting the birth plan you want for Smudge


  2. It’s always hard for me to hear that some women fear ICAN meetings. ICAN meetings are the one place I know I can be totally and completely accepted. Yes, there’s a lot of anger and frustration there. But it’s a support group meeting – we’re there to let people talk about hard things that often nobody else in their life will let them talk about. We engage and help each other understand what happened to us, what to do in the future, and how to start healing. I hope that moms who are hurt from their cesareans, or want to avoid one, will come to us knowing our arms are wide open and accepting of every type of birth. My co-leader isn’t even a cesarean mom – she just had a hard first vaginal birth. I hope you go again and let us know what you think. I also hope you get the birth you want this time. It can be very healing as well.


  3. My fear had been in having a dr who would want to start me off rather than letting me go into birth naturally and now with my second knowing what happens in hospital here I have different fears. Writing them down and talking about them to different ppl helps and yeah will be also talking to the professionals involved but the prob is that there are too many different sections over here and so i know the message wont go through and its either me remembering through contractions to tell them all to the nurse at the time or having my husband remember to tell them…both of whch are difficult! passed by from SITS


    marfmom Reply:

    Have you heard of a doula? I’m going to be writing about them later this week or next but that is part of a doula’s role, to help you remembering what you want and help your partner communicate that with the medical professionals. That might be something for you to look into for this pregnancy; I’m getting one for that purpose too :-)


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