Scoliosis and Spinal Fusion - To Get Pregnant or Not To Get Pregnant?
This is Part 36 of a serial blog originally titled 'Martha Carter's Healing Journey'. Curious about the earlier posts? To start from the beginning, read Part 1.
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Reflecting on the choice to get pregnant with a spinal fusion.
While hosting one of the monthly online Fusions Support Group meetings last month, I was once again struck by the incredible resilience shown by each person dealing with this confounding condition!!
If you are one of us, give yourself a pat on your back :)
As usual, the conversation ‘twisted’ all over the place (pun intended), starting with people sharing their stories and others asking questions, and somehow we ended up talking about pregnancy… and whether or not having scoliosis and/or fusion surgery impacts one’s decision.
WHOA that led to a very interesting, intimate, touching and reflective discussion!!
I thought back to my early thirties, when I was finally coupled with a beloved, and I wondered if children were in our future.
Unlike my sister and many of my friends, I was not the kind of young woman with a strong desire to have children, nor did I even think about them much. I always assumed they would come when they were meant to, and I wasn’t overly careful - yet I was generally cautious with birth control.
This perspective was likely reinforced through my job as a director and choreographer surrounded by professional dancers, who often wait until later in their careers to have children.
I never said it aloud at the time, but I do remember wondering how having Harrington rods would affect me as a mother; whether if would be difficult to be pregnant with rods, and whether or not I was up to the necessary physical challenges of breastfeeding, lifting, carrying, and holding a child on one hip. I definitely noticed the breadth of these challenges, especially the under-appreciated and complex ’put the kid in the car seat twist’, when caring for my sister’s toddler. Hmmm.
I also remember—while laying flat on my back after fusion surgery at 14—being completely traumatized at the idea of giving birth, after watching a very graphic documentary about it on late night television. I had the only colour TV in the house and would often stay up late watching all kinds of things that I was likely too young to properly understand. Nevertheless, I remember the sense of horror I felt at the idea that I may one day have to do ’THAT??'—a negative reaction that was very likely exacerbated by the fact that I was laying immobilized in a plaster body cast with a freshly-fused spine(!!). I had totally forgotten about that film and my reaction to it until the group discussion. Another hmmm.
I was 33 when I started to research having my rods removed, and I had that surgery when I was 35. Following rod removal surgery, a uterine fibroid that I was aware of but never really bothered me as it was small and growing very slowly, suddenly grew very large - to the size of a cantaloupe! At the time, I imagined that all of the leftover ‘negative energy’ from my rods just dropped down into the fibroid and expanded it, like a balloon. Nobody could explain it—except my very ‘out there’ energy therapist—and the fibroid became very uncomfortable. It felt like I had a big, heavy ball in my pelvis that tugged painfully on my internal organs every time I moved. I had barely got through the very significant rod removal surgery and now, suddenly, I was looking for doctors to remove this over-sized fibroid.
The first three doctors - all female - recommended I have a hysterectomy… Say what?? Their recommendation made me feel small and powerless, and I realized that I DID feel strongly about keeping all my female bits, as much as possible, regardless of whether I was going to have children or not. I mean, aren’t those hormones important? But I was told that the surgery can be risky, so it’s easier to just remove it all.
Thankfully, I found an older, grandfatherly doctor who was committed to preserving fertility wherever possible. His office walls were covered with pictures of newborns, clearly sent to him following successful surgeries. The photos gave me comfort and confidence that he knew what he was doing, while also knowing that he would do his best to keep my organs.
At age 36, I found myself, once again, having a fairly major surgery to remove the fibroid through a cesarean incision on my lower abdomen. It went well, but afterwards, the pain was incredible. It hurt to move, let alone laugh, for at least 10 days!
I remember wondering, how do women sustain an incision like that and also care for a new baby?
Over the next few years, I never tried to become pregnant, and it never happened.
Thinking about it all now, my body never really felt up to it, and it turns out that these feelings were echoed by others at the aforementioned Fusions Support Group meeting.
To paraphrase one participant, whose words really hit home for me… (reconstructed from my scribbled notes):
"I have never in my life had the least desire to be pregnant even though I adore children.
I think there is a connection between this subject and my relationship with my body, since as early as I can remember I was being stripped naked and measured and told that my body was wrong! Doctors were poking and prodding and explaining why I wasn’t correct or how my body wasn’t supposed to be like that.
The notion that our body is good and our own seems like a prerequisite to make the decision of taking on the enormous project of giving birth to another life. I guess it’s a real psychological thing. I don’t think I have ever remotely felt that my body is mine - that it is great and miraculous and all the things that female bodies are supposed to be. I have always been told that my body is twisted and crooked and messed up. Seems like there is some piece in there that creates extreme body-image discouragement. They tell us from the beginning, as soon as we are diagnosed, often early in life. We never get a period of time to grow up and feel free in our bodies without feeling like we are wrong.”
Jeez, I thought, she has a point.
Although many people with fusions do get pregnant and have children, the group wondered together if there are even more of us who choose to not?
We also wondered if those who do have children go through a natural birth or tend to have cesareans?
Of course we all recognize that every body, personality, lifestyle, personal preference and fusion surgery is completely unique, so it is extremely difficult to determine ‘what is what’ exactly. However, upon reflection, it occurs to me that many of the ‘fusioneers’ who I have spoken with over the years do not have children, and there does appear to be a connection for many of us. Not only do we have physical struggles and discomfort, but the deeper trauma caused by the surgery can affect our entire soma in myriad ways, so it makes sense that pregnancy is not for everyone with this condition.
What about you, dear readers?
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