When I was thirty-two, I underwent IVF for the first time, to build my family after years of battling endometriosis. The first time, it worked. My living son Neil is now five. When we were ready to try for a sibling, after vaccines were rolled out in March of 2021, we chose to undergo IVF again, using a previously tested frozen embryo from our first cycle. It appeared to work, and at Christmastime in 2021, we felt the kicks of our baby girl to be, due in June.
In Jan ‘22, our hopes were dashed abruptly. A checkup at 18 weeks revealed many fetal anomalies – our daughter was missing parts of her heart and virtually all of her brain. If she survived, the top fetal medicine experts we consulted told us she would almost certainly live a short and painful life, without ever being able to see us, talk, walk, eat, or know us as her parents.
We then chose to undergo amniocentesis as the last part of our information-gathering process. This resulted in the premature rupture of my membranes, also known as my water breaking or PPROM. This well-known but rare complication not only made it so that the baby’s lungs would also now not develop properly – it also put me at risk for developing sepsis if we did not terminate our pregnancy, which can be fatal. After the amnio, I was rushed to the hospital for observation.
My doctors there determined that a D&E (a surgical TFMR) would be necessary to save my life. It was extraordinarily painful, in part because I had fought so hard for this pregnancy and could not accept that it was already ending. Adding insult to injury was the fact that in my charts, it still reads as an “elective abortion.” I then had a complicated recovery. I still feel so very sad that I was unable to hold my daughter, to touch her – that I will never know what color eyes she had.
That said, we had wonderful doctors who said all the right things throughout– that this would save my life, that we were allowing our little girl a life that was free of pain and suffering, that this was sadly the only way forward if we were to preserve fertility for future family building, and that we were still good and strong parents–that this wouldn’t change that. All of that has helped me to have resilience amidst great suffering.
Not all loss parents refer to their pregnancies using names, or even terms like “babies” and I fully support their right to make meaning in exactly the ways that they need to. That said, it felt important to my husband, and later to me, to choose to refer to this loss as the loss of a daughter-to-be, and to name our daughter Saule Marion. Saule is the name of the Lithuanian sun goddess of compassion, who tends to the orphaned and suffering; Marion is my beloved grandmother.
Due to my work as a grief group facilitator, I now know many people who have multiple TFMR stories, and multiple stillbirth stories – lightning can and does strike again. So though my husband and I have talked many times about what it would mean to grow our family biologically, the Dobbs ruling that came shortly after Saule’s due date hit us hard. The possibility of going septic or bleeding out next time under Dobbs, leaving my living child motherless, is incredibly sobering. So, at this point, we are mulling the choice between either being one and done or considering adoption.
Writing has always been my way to work with the both/and of life, and I’ve written a lot on the topic of this loss, so you may see me sharing links as relevant in this space if I think they will help one of you feel less alone. Gardening is the other way that I make space for my grief. At our last home, we created a grief garden with Saule’s ashes in it to remember her, and hung a wind chime in it with her name and the words from a John O’Donohue poem we love about grief called Beannacht: “May the nourishment of the earth be yours.” Now that we have moved, we carry the pot with her ashes in it still. This fall, it surprised us by sprouting tomatoes, tomatoes that grew from a seed we never intentionally planted, that simply made its way to us through the magic of compost. This is how I feel about my life now without Saule, three years later – that it is bearing fruit, though not the fruit I originally had in mind.
