Guest Writer Wednesday: What Having a Unicornuate Uterus Taught Me About Holding Space
“Looks like you might have a unicornuate uterus”, the doctor said, looking down at me through his wire-rimmed glasses. I was in a fancy medical office on Manhattan’s Upper East Side staring at a flatscreen TV that showed a single plume of colored dye entering my uterus, only to exit anticlimactically on one side. The procedure, a hysterosalpingogram (HSG), tells you whether you have any reproductive blockages—and also, apparently, if you have any genetic conditions that sound like a crossover episode between My Little Pony and Sex and the City. I had not expected to see the dye do anything other than artfully and symmetrically flow out of two corners of an upside down pyramid, like all the pictures I’d ever seen of the female anatomy. I had also never expected to hear such a whimsical-sounding diagnosis coming from such a serious-looking doctor in such a Real Housewives-looking office. This was truly the most surprising and visually undeniable way I could have found out I only have half a uterus.
Coming home from my diagnosis, I did what any rational older Millennial would do: I Googled It. Google had been a friend, teacher and confidante since my college days, and it was going to help me now! Except it didn’t. It just showed me depressing statistics like “50% of patients delivered a live baby...miscarriage 34%”. Actually, we can blame Wikipedia for that one, but the point is that the numbers did not sound good. Pitting a one hundred percent desire to have a baby against a fifty-fifty chance of delivering a “live baby” (an antiseptic choice of words in and of itself), was incredibly jarring. Pregnancy with a unicornuate uterus (UU) seemed like a dangerous and risky proposition, and I didn’t know whether I should give up or turn to other options like surrogacy or adoption. Conversations with doctors didn’t help either, as they only had anecdotes from the handful of cases they’d personally experienced.
I eventually turned to an Internet platform I had an even more complicated relationship with: Facebook. I typed “Unicornuate Uterus” into the search bar in a late night stupor, and found a few groups for people who had the same medical condition. It was a God send. I met real women who had had “live babies” with a UU—and some had even had more than one child. The discussions in this group made me feel hope that I could conceive, have a healthy pregnancy and even deliver a baby safely. I never would have found the strength to keep trying if it weren’t for these women sharing their stories and support. Their words meant more to me than numbers ever could.
Amazingly enough, I became pregnant naturally three times over the course of one year. The first pregnancy resulted in a ruptured ectopic at eight weeks that required life-saving emergency surgery. But I was, miraculously, one of the one in 76,000–150,000 pregnancies where the ectopic occurred in a rudimentary horn, and thus still had one good Fallopian tube to keep trying. The second loss was a chemical pregnancy that miscarried at five weeks. The third pregnancy gave us our son, Wolfgang, who is now almost two years old and more full of energy than all the My Little Ponies: Friendship is Magic characters combined.
But going through multiple losses changed the experience of pregnancy. It was not all happiness. It was not all magic. It was moments of happiness and magic mixed with even more moments of anxiety, disbelief, and fear—and, of course, guilt for not having more moments of happiness and magic. I chose not to have a registry or baby shower. I didn’t announce anything on social media. I didn’t even have the courage to walk into a store and look at baby clothes until I was well into the third trimester. And my Amazon wish list stayed just that until a few weeks before I was due, because boxes of diapers on your front porch are a lot more concrete than the faith that comes and goes. It was hard to focus on the future when things had not turned out okay in the past, so instead I learned to focus more on the present moment.
As my body grew and took up more physical space, I also had to learn to expand my own inner space. I had to allow myself the ability to feel extreme emotions and sensations. I felt myself being stretched from the inside out, not just by my growing baby, but by the hugeness of joy, sadness, nausea, constipation, the highest of hormonal highs and the lowest of lower back pains. It was often hard to reconcile how excited I was for the birth of our baby, while simultaneously being afraid that it might never even happen. As I grew visibly larger, strangers would greet me on the street with huge congratulations. I knew that what they saw was just another cute pregnant lady. I knew that what they saw was the hope of life in a round belly. And most of the time I would accept their excitement with a smile. I would share and receive their unfiltered happiness in the middle of the sidewalk for a fleeting and abundant moment. But more often than not I would walk away knowing that my body was not the ideal habitat for a baby—that things might be better if he only had a little more space.
As the days went on, I had to learn the art and practice of letting go. I had to fully experience and release the anxiety, the worst-case scenarios, and even the unbelievable gratitude I sometimes felt. Staying with any one emotion for too long was painful. I realized that I had to let the thoughts be momentary AirBnB’ers in my mind, because the more important tenant was the one with the nine-month lease in my studio-sized womb.
For nine months I was constantly pulled back and forth between so many different and intense states of mind, but there were three thoughts that helped me get through this period of time. I’m not a religious person, but I do believe there is something greater than ourselves, and that there is power contained in our thoughts. Call them mantras, prayers, or meditations, but they helped me through many moments of uncertainty. I arrived at these words based on various words of wisdom I heard from the supportive women in my life (i.e. therapists, mentors and friends). I hope you can use them or be inspired to find your own words of comfort and wisdom as well:
Please send me the little soul that is most aligned with mine [and my partner’s] so that we can have fun, learn from each other and do what we came here to do.
At this moment, I am pregnant. At this moment, my baby is safe. At this moment, my baby and I are safe.
It’s safe for you to arrive when you’re ready. You are already so loved.
Whenever I felt the anxiety start to rise, I would tune into my baby and my body. Sometimes we wanted stillness. Sometimes we wanted these words. Most of the time we just wanted bacon and ice cream.
I am still a member of the UU groups on Facebook. Only now, I don’t go there to find faith and support. I go there to give it. I go there to be one of the stories and one of those loving women who tells others not to give up hope. Beyond the medical questions and requests for advice, one of the most common questions asked by pregnant women in the groups is, “How do I deal with the fear and anxiety?”. And so I share my stories, and I share the words that helped me. I go there to hold space for these women with the space I found in myself. I even started finding a way to combine my identity as a performer with my identity as a new mom by telling my story onstage (How A Unicorn Became a Mom).
Pregnant and Onstage (Photo Credit: Tamara Smith @taqueth)
At the time, finding out I had a smaller uterus felt like the weirdest and worst thing in the world. My body was not what I thought it was. I was not who I thought I was. But learning to be pregnant against many odds meant expanding my own understanding of myself. In many ways, having less space taught me to hold more space. Having less space taught me to expand even greater into what I already had. And every day that I get to hold my son, I’m reminded of how great that capacity really is.
Jen & Wolfgang
If you have received a unicornuate uterus diagnosis and are looking for support, check out these Facebook Groups:
Jen Kwok is a writer, performer, mom and dog lady. Originally from Southern California and currently based in New York’s Hudson Valley, Jen is a multi-hyphenate creator with a musician’s soul, a healer’s heart and a comedian’s delivery. Her work ranges from TV appearances on Netflix’s Friends From College & ABC’s Quantico, to original comedy music videos and 90s R&B covers with a classical twist. Her current project is a podcast called Unsquishing, where she talks to creative women of Asian descent about process, identity and mental health. You can find her online at @jenkwokjenkwok on IG and TikTok and www.jenkwok.com