Musings of a Marfan Mom

Ellen’s Birth Story

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Awhile back I invited readers to submit their birth stories, to be posted while I take a maternity leave. Since Baby J is here, it’s time to post them! Some of the women have Marfan syndrome like me, but not all. If you have questions for the authors, feel free to leave them in the comments section; I’ll also try to email them any questions I see (as soon as I have time).

Ellen is a mother of three, a writer, and also has osteogenesis imperfecta. She blogs about reproductive choices from a religious perspective at Choices That Matter and is currently working on a book, to be published next year.

I knew early on that I wanted to have babies. There were significant obstacles to this desire (more of a calling, really), including my having a genetic bone disorder called osteogenesis imperfecta (OI). Any child of mine has a 50 percent chance of inheriting OI, which causes fragile bones, bone deformities, scoliosis, and other symptoms. I was terrified of the idea that a beloved child would have to endure frequent bone fractures, casts, surgeries, wheelchairs, braces, and pain, just as I did. But I was also certain that motherhood was something I was meant to do.

I was also fascinated early on with the mechanics of birth; in fact, for a time in my 20s, I considered becoming a midwife. I had a visceral desire to experience my own children’s births fully. I was not afraid of the pain involved; I had plenty of experience with pain. And it seemed to me that giving birth would be a way for my body to be redeemed, to be transformed from something fragile and incapable of so much (running, jumping, falling down without breaking) into something strong and capable.

My husband and I decided to have biological children in spite of my genetic risk. During one of my first ob-gyn visits with my first pregnancy in 1999, I brought up delivery options. My bone disorder is rare, and medical professionals who don’t quite understand it can be overly cautious. I knew from my research that women with my type of OI (the most mild type) who have not had pelvic fractures or pelvic deformities can deliver babies vaginally. I was also familiar with research indicating that c-sections are not necessarily safer for babies who have OI. But I was afraid my doctors would freak out about a fragile mom delivering a potentially fragile baby and insist on a c-section. I was relieved when the doctors said they were fine with my planning a vaginal birth. I settled into my pregnancy, took childbirth classes, and looked forward to seeing what my body could do.

But my baby had other plans. She was breech, and because of the potential for her to have fragile bones due to OI, the doctors were unwilling to try an external version (a decision I agreed with completely). I couldn’t believe, though, that I was going to end up having a c-section after all those years of looking forward to childbirth. I did everything I could to get her to turn—lay down with my hips elevated even though this made my heartburn much worse, pressed headphones with soothing music to my lower belly so the baby might try to move her head closer to the music. She didn’t budge. I reluctantly agreed to a planned c-section. Everything went well; my epidural went in painlessly and worked perfectly and the baby was healthy (she was eventually diagnosed with OI, but was born without any fractures). The doctor who delivered her said it was no wonder the baby didn’t turn; I am only 4-feet 8-inches tall, and my torso is very short. The doctor said it was a very tight squeeze and the baby just didn’t have room to turn herself around.

I found c-section recovery to be a breeze, perhaps because I’ve had lots of surgical experience. I was walking the baby around the block a week after her birth. But I had a lingering disappointment that I hadn’t gotten to prove myself by giving birth naturally. I made sure, when telling people that I had a c-section, to emphasize that it was because of the baby’s breech position, not because I was too fragile or weak to give birth.

With my second pregnancy, I decided to try a vaginal birth after cesarean (VBAC). I did a lot of research on my own. My husband is a medical librarian, so he brought home lots of journal articles discussing VBAC risks. I also consulted long-distance with an ob-gyn who has treated a number of women with OI, who agreed that my circumstances made VBAC a reasonable option. In my large ob-gyn practice, I saw a different doctor every visit. One older, more conservative doctor insisted I would never be able to give birth vaginally, because “short women have a hard time pushing.” When I asked a different doctor about this, he was flummoxed, because there is no correlation between a woman’s height and her ability to give birth.

I went into labor at dinnertime, about two weeks before my due date. When I arrived at the hospital, the doctor on-call was skeptical about my VBAC plan and had me sign a waiver essentially saying I understood all the risks and wouldn’t hold the hospital responsible if something went wrong. But the nurses were great and very supportive. I had a textbook labor, progressing steadily through the night. I had been undecided about what pain relief to request, if any, and eventually asked for an epidural when I was about 5 centimeters dilated. Getting the epidural was a hair-raising experience. I was having contractions every two to three minutes, and the anesthesiologist had trouble getting the needle in the right spot. She finally got it in, but it was in a blood vessel, so she had to start all over again. Finally, once the epidural was in and working, the anesthesiologist admitted she was nervous about poking a needle into a fragile spine. I could have told her that an epidural needle was not going to break my back.

I settled in to get some sleep, but soon my water broke and I started feeling a lot of pressure. A resident came to check my progress, and asked the nurse for an ultrasound machine, because, “I don’t know quite what I’m feeling.” Turns out she was feeling my baby’s bottom. This baby too was breech, but for some inexplicable reason, my doctor had not checked the baby’s position when I was admitted. The resident said to me, “You know what this means, don’t you?” To which I answered, “Yup. I sure do.” Another c-section. Honestly, at that moment, I was not bothered by this turn of events. Knowing now that the baby was breech and that I was in transition, I was anxious to have the c-section because I had no interest in a vaginal breech delivery. Our second daughter was pulled from me about an hour later. I was disappointed that things turned out as they did, but still glad that I got a chance to go into labor spontaneously and know what active labor feels like.

Two years later, I had our third and last baby, a son. While this baby finally got the head-down position right, there was no possibility of my having a vaginal birth. After two c-sections, my doctors would not agree to a VBAC, and that was fine by me. By that time, I understood that childbearing had redeemed my broken body, even if I hadn’t experienced natural childbirth. My body carried and nurtured three new human beings. That they were cut out of me rather than pushed out just doesn’t matter.

I’ve realized one thing that can make women who’ve had c-sections feel that we’ve missed out on something vital. We mothers love birth stories. Even now, when I and most of my friends are done with having babies, we still sometimes share stories about those days and nights that changed everything.

C-sections don’t make very good stories. We are passive recipients of medical attention. We can’t make our girlfriends guffaw with recognition when we talk about how we told the doctor to go %&^*# himself when he told us to push harder. We can’t relate with pride that we sent away those pesky medical practitioners who wanted to try pitocin, because we were doing just fine on our own, thank you very much. We can’t talk about how long we pushed, or rings of fire, or the way our heart sped up with excitement and terror when told we were at the magical 10 centimeters. I think birth stories in part are a way for women to remember this transforming experience, to feel pride and awe at what their body did, to remind themselves and others that, while they may be wearing stretch pants and milky sweatshirts, they just accomplished something amazing. C-section stories don’t offer any of that. Add to that all the voices telling women that c-sections are not the ideal birth, and it becomes difficult to talk about at all, much less with pride.

During my third c-section, my epidural didn’t work completely. So I had to use all of those breathing techniques I’d never needed before, and I had a pretty darn good story (if a pretty awful experience). It was the first time I felt like I had something interesting to tell my friends about my baby’s birth, and the first time people were really interested in hearing all the details.

I still read birth stories sometimes, even though my childbearing days are over. I share with home-birth and natural-birth advocates a frustration with overmedicalized birth and too-frequent inductions and c-sections. But I’m also impatient with those who, in advocating for less medical intervention in birth, claim that women can “trust their bodies.” Don’t they know, I wonder, that bodies are not really worthy of one’s trust?

Theologian Hans Reinders describes people without any obvious illness or disability as being “temporarily able-bodied.” There is such truth in that. All bodies break, all bodies fail. The power of childbearing does not lie in our bodies’ ability to do exactly what we want and expect them to. My body has never done exactly what I wanted and expected it to, especially when it came time to birth my babies. The power of childbearing, rather, lies in our bodies’ ability to bring forth something exquisite, miraculous, and imperfect (as all human beings are) from its own exquisite, miraculous, and imperfect depths.

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4 Comments

  1. Wow, Ellen. That is just beautiful. I think you said it better than I ever could have. What a great post. Thank you so much!

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  2. It’s like listening to my own thoughts, Ellen!
    I ‘ve been there!
    Healthy people are not really healthy – they just don’t know what their case is yet! We forgive them being judgemental because we know!

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  3. I love birth stories!

    I had my son vaginally but I was young and did not know much about the birth process. My daughter was an emergency c-section and my 2 nd son was born 15 months later by a planned csection where I then had my tubes tied. I have since regretted having them tied because I would love to have a home birth…but I suppose that will never happen

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  4. Thanks so much for your story my hubby has oi type 1 and baby is breech our older son has oi and its heartbreaking when he gets a fracture . I was researching ecv because the dr felt it would be fine there is no way I’m confterble with the risk ! I am so afraid it’s way to much pressure and twisting that something will break .

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