Infertility: Our Road to Diagnosis
The delicacy of time was not lost on me as I watched the words fall out of our doctor's mouth. He was careful, he was direct, and he was sincere. His words were deliberately chosen for me. His eye contact didn't waiver which I appreciated more than he knew. I needed to breathe in the truth that was pouring from his lips and exhale the rising heat of hesitation burning within me. I was swallowing tears faster than they could form. I had prepared myself for this meeting. I knew what was coming after he had called to let us know that our second round of IVF had failed. I refused to allow grief to stop me from being fully present and from leaving that office without an understanding of what was to come.
He had prepared me for the possibility of this moment with subtle intention over the course of the last nine months. Each mile marker gingerly shared with me as it came to his awareness paving the way to unchartered territory. Knowing we could never get the first year back that we spent with another fertility clinic he was cognizant that what we needed was to be truly seen. This change in providers was the correct choice regardless of how my world was about to shift.
After our first round of IVF failed I pleaded with our first Reproductive Endocrinologist, yet again, to order a genetic test called karyotyping for my husband due to a heredity chromosome abnormality we had learned ran in the family. With some coaxing, she agreed. Three weeks later she called to confirm my husband was being diagnosed with a rare chromosome abnormality called a balanced paracentric inversion on chromosome #7. We knew it to be a possible cause for miscarriage and were unsure of its impact on conception. She admitted, "this type of male factor infertility is over my head," yet, asked us to try IVF again under her care. Given a history of repetitive oversights, lack of trust in her diagnostic information, and an overall lack of attention to our treatment, we chose to seek alternative care. We found another doctor specializing in genetics and reproductive endocrinology who came highly recommended from a family member. He would eventually lead us to answers. Lesson learned, I will never second guess advocating for my medical care again.
After reviewing all of our records I became acutely aware that our new specialist's line of questioning wasn't directed at my husband as we had anticipated. He compared our information to that of an IVF round of an in-law who carries the same abnormality and quickly realized that DNA was not our only problem. We were batting zero and he would have expected twenty-five to fifty percent of our embryos to have been viable. New blood tests confirmed that two indicating factors of female reproductive potential, anti-mullerian hormone (AMH) and follicle stimulating hormone (FSH), were not only markedly different than what was reported from the last clinic but placed me smack on the border of too low and too high respectively. We would need to try IVF again with a few changes in protocol and his careful observation.
We agreed, knowing for the first time on this journey that we were no longer just a number at a clinic. We had a story and this doctor was trying to help us write our final chapter. He saw us exactly as we were, two people with our life plans on the line and he was willing to take the wheel. Out of the ten embryos that were created, most arrested development between day three and day five after fertilization. One of them, though lagging in a usual developmental timeline, made it far along enough to be genetically tested for a possible embryo transfer.
I spent the two weeks waiting for those results existing in a bubble of pure love. As far as I was concerned I was granted permission to be entirely hopeful. I relished living in that space. For the first time since we began trying to conceive in 2016, this fragment of my husband and I existed in the world. It was cryopreserved and couldn't be harmed. Now this was a world that made sense to me. One where disease wasn't dictating my body's ability to do what it was supposed to do, where my simmering frustration at the lack of affordable women's healthcare could take a breather (albeit temporarily), and tenderly where science and faith could coexist peacefully. I loved this space where I could savor the idea that our baby was on the way to finding us.
Devastatingly, our embryo was not viable. There was no embryo to transfer as it was deemed abnormal due to an added chromosome that would prevent it from development into healthy live birth. It was not related to the genetic abnormality my husband carries and this in addition to all signs leading to this point solidly confirmed our fears of severe female factor infertility due to Diminished Ovarian Reserve.
It was with that call that time stopped. I laid there, willing the earth to please stop turning just long enough to give me a chance to catch up. This was when God, or the Universe, or something higher power-ish was going to show up. I was open and raw and wanted to be found. I was the closest I had ever come to having a faith in something that I could verbalize fully. I had worked hard at getting there. The greatest writers, creatives, and spiritual teachers I had invested myself in over the last few years, the ones whom without knowing it helped prepare me for this exact moment, had shared those awakenings; dropping to their knees on a bathroom floor and holding space for the stillness where they would hear the voice telling them what to do. I waited. And cried. And waited more. I couldn't hear anything.
Maybe I wasn't really still. In hind-sight, maybe I wasn't really listening.
There are pieces of that day that are etched in my memory forever and pieces that I don't think I will ever remember. I knew that I was grieving the loss of what the last two weeks had given to me but even more so because of a knowing that was clawing at my stomach; that all of the last two years were leading me to the understanding that I may not have the ability to create our child in the way that we all often just assume a woman can. I hadn't even consciously realized that I had existed with the belief that conceiving our child was my right. As it turns out it is a privilege; a phenomenal and miraculous privilege.
In that moment, we became part of the 1/3rd of infertile couples coping with male and female factor infertility simultaneously.
Our doctor's words hovered over me. "I will support you if you feel you need to try IVF one more time with your eggs but I want to be clear... and I believe that you understand this already, I am no longer medically recommending that course of treatment. I do not believe we will have a different outcome. We will not be able to use your eggs to create a healthy live birth. Are you prepared to discuss using an egg donor?" Our vision of what it means to create a family took on a whole new world of understanding.
As the days began to pass I caught myself studying my own features. My smile, my eyes, the knees I have always oddly disliked, who did I get them from anyway? The hair I colored over the years because it irrelevantly was "too dark." It had been passed down to me from the family I was genetically linked to, did that have any meaning? I do resemble my grandmother at certain times in her life, don't I? I was no longer able to share highs and lows of hoping for a little one with my dimples and my husband's kind blue eyes with the strangers who had become friends in this battle. Where did I fit?
The "what if's "and the "how's" and the "should we's," flooded my mind. If we do this: who would be the woman that would give our daughter the wrinkle in her nose? Who would be the woman whose genes contributed to our son being right handed instead of left like me? How many people would accidentally ask me who the 'real mom' is? I couldn't help but notice the subtle yet heavy emphasis others placed on their children being like them in either looks or personality. Would these same people understand my bond would be built entirely on our souls getting to know one another? Would my son bond more with my husband because they would have the opportunity to share the same nose and propensity for science? Would my teenage daughter someday scream to me that I wasn't her real mom? The flood didn't stop, how can anyone afford this process? Why doesn't health insurance help with any of this? Would my child love me less?
The biggest questions of them all:
Would this child feel any amount of pain as a result of a decision I would be responsible for making? How will I ensure that they know they, exactly as they are, exactly as they came to me, are fully and wholeheartedly, enough.
It is interesting thinking about parenthood from this perspective before it even begins. It affords me a window view that I am not sure people outside of the purview are privy to seeing. The genuine knowing that being a parent doesn't dictate the ability to protect or shield a child from all pain but rather a vulnerable willingness to stand directly in front of the fire next to them and teach them how to walk through it, even when we aren't entirely sure ourselves.
Those last questions burn tears behind my eyes some days and yet ironically, it is also how I know that I am supposed to become their mother. So, until then, I just keep showing up.
