The loss of a baby during pregnancy is traumatic. It doesn’t matter when or how it happens. In my experience, an early loss is the loss of your hopes and plans for the future, while a later loss is that and the loss of a loved one whom you’ve shared your body with for months; you’ve felt them living inside you and are attached — literally and otherwise. Both are a loss of time, which is no small thing for women in their late 30’s and 40’s. All are physically traumatic for the mother — whether your body miscarries naturally, you require a D&C or D&E, or need to go through labor and delivery. A late-term loss comes with the additional physical trauma of being postpartum: you’re left in a foreign, stretched, lactating body with raging hormones and no baby. Losing a child because you chose to terminate a pregnancy rather than bring them into the world with insurmountable medical issues adds a complex emotional pain that is oversimplified or ignored by people who don’t believe that choice should exist.
These are traumas that often go unspoken. There’s something about pregnancy loss that has always been hushed as if it’s a taboo topic that we should not burden others with. As a result, we miss out on the opportunity to find comfort in knowing that pregnancy loss is common, that it’s not you, that no pregnancy is without risk, or that you're not the only one who has had to make such a painful choice. It often takes having a miscarriage to find out that a friend or family member has also had one. Most mothers deal with this pain alone or in private while they continue to go to work and carry on with their lives as if nothing happened. A late-term pregnancy loss is impossible not to talk about — you were visibly pregnant, and now you’re not. But in talking about it, I find myself reluctant to say exactly what happened, and I certainly don’t use the word abortion. Introducing controversy, and opening myself up to judgment or shame, on top of the pain and guilt I’m already feeling is scary.
A larger side effect of keeping our pregnancy losses quiet is that our stories are not heard. This enables lawmakers to make laws on behalf of people who don’t have the full picture, and who have no stories to challenge their thinking or to empathize with. These laws control our bodies, our lives and the lives of our families, our health, careers, finances, emotions — our human outcomes. Without hearing our stories, lawmakers and activists can perpetuate the belief that abortion is a sin committed by monsters and loose women, that late-term abortion is murder committed by immoral doctors and indecisive women who “let it get to that point” or who aren’t prepared to love their child unconditionally. They feel entitled to judge a woman in Texas who, in the midst of a heartbreaking loss, had the strength to publicly fight for her right to decide her family's future (and the rights of countless other women who don’t have the same strength or resources).
I know that one story won’t change many minds, but I do know that mine has changed some. Maybe if more women tell their stories to more people we can change more minds. So, I’d like to share mine.
My husband and I started trying for a third bundle of joy as I approached 40 with four pregnancies — two children and two miscarriages — under my belt. I got pregnant fairly easily but did not allow myself to get excited, knowing from experience that the positive pregnancy test was only the first of many hurdles in confirming this pregnancy would be viable. But everything went smoothly: a heartbeat at that first appointment, the early blood test showed no chromosomal abnormalities, and my 16-week ultrasound looked good. I let myself be excited. My daughters, now 5 and 2, were also excited about their baby sister growing in Mommy’s belly. They named her Jojo, and talked about their plans for her often. I couldn’t believe it could be this easy.
At my 20-week scan, the ultrasound tech left the room to talk to the doctor for longer than I would have liked.
They came back together and the doctor explained that the baby was measuring in the 7th percentile and anything under the 10th percentile is considered small for gestational age. This alone wouldn’t be a huge cause for concern, but the baby’s right ear was small and misshapen. The two things together was reason to run additional tests to confirm everything was fine. The doctor said this could all be nothing, and perhaps the baby just has Microtia, a birth defect of the ear of varying severity. As the panic set in, I wondered what I did wrong to cause this. Was it the hemp seeds?! Am I an idiot who didn’t know you can poison your fetus with the marijuana in hemp seeds? Was I not eating or sleeping enough, causing her to be small? Was I too stressed at work?
The following weeks were filled with doctor's appointments and phone calls. The next day I spoke to a genetic counselor who explained the available tests and reassured me that this did not mean that there was definitely something wrong. In fact, with a unilateral abnormality like we were seeing with her right ear, it was more likely to be a birth defect. I had an amniocentesis the next day. In addition to the usual tests run from an amnio, I qualified for a study at Columbia University where a full genome sequencing would be performed for free — a test that is not covered by insurance and would typically cost $3k.
I went for weekly ultrasounds to monitor Jojo’s growth and to try to get a better view of her ear. She continued to grow but remained small. Some weeks she made it over the 10% mark, but her head stayed below 1%. She moved a lot and never let anyone get a good look at her funky ear. I felt her spunk and loved her more for it. Even though my first two children were 8+lbs at birth, maybe this one was just little? Maybe she just had a small head? We hoped that her ear would not be too severe, but whatever that turned out to be, we knew we would overcome it. One by one the test results from the amnio dripped in, all indicating that nothing was wrong. It became easier to believe that she was fine and this was all just an exercise in crisis management. But five and a half weeks after my 20-week scan, I got my first call from the genetic counselor that didn’t start with “everything’s fine.” I was 25 weeks, 6 days pregnant.
I don’t think I can describe the pain I felt learning the news that our baby girl was not ok. It’s the sort of news that melts you into a puddle of your own tears. I could have disappeared into the bed I cried in. We were told the name of a genetic disease so rare that the genetic counselor had to look it up before calling us. There is very little research on it, and the counselor gave us those studies along with the medical documentation of the condition from the lab that found the results. The results were definitive and fully explained all the symptoms we were seeing in the ultrasounds which included Microcephaly, Microtia, and restricted growth. The papers also laid out all the symptoms we couldn’t see that would be evident at birth and continue to unfold throughout her life. Our baby girl would need a lifetime of care, however long or short that life would be. Among many other issues, she would struggle to eat, talk, move, learn, and grow. My husband and I knew we did not want this for our baby or her two older sisters. I knew what this meant; I needed to have an abortion. I desperately asked, “But what if she’s ok?” I wanted her to be ok. I was desperate to find a way for this to not be happening. But I knew it was, and for us, there was no choice at all; we could not subject our baby and our family to this painful life.
Despite our certainty in our decision, the heartbreak of choosing to terminate our tiny love wrecked us both.
Our only job was to unconditionally love our baby and we couldn’t do it; we felt like we failed as parents. But we did love her — so, so much — and we must make hard choices to protect our children. If we were to bring Jojo into the world in this broken body, we would do so knowing that we could never meet her needs and would spend her life trying. In trying we would no longer be able to meet the needs of our other two children. And though I feel guilt saying this, my husband and I have needs, too, and as the glue that holds our family together, those needs must be met as well. Life is hard enough as it is and pain is inevitable, but if we can prevent pain for our children then we feel we must.
The following Monday kicked off a 4-day roller coaster of scrambling to find a doctor who could do a D&E (Dilation and Evacuation) at this gestational age by the end of the week. I initially assumed I would have to deliver her and was mentally preparing myself to go through the pain of labor and delivery that is only erased by the joy of a new baby. I didn’t know that being unconscious was an option, and once this was on the table I actually considered choosing labor and delivery so that I could hold Jojo. It broke my heart that I would never hold her in my arms or see her in this world. Learning that each procedure would start with an injection through my belly to stop her heart made me change my mind; I could not be conscious for that. But there were two main problems. First, the doctors in the Mt. Sinai hospital system were unavailable, already scheduled with multiple women of the same gestational age as me — something that is very rare, but brought on by an influx of out-of-state patients due to strict anti-abortion laws in other states. Second, even in hospitals with complex family planning practices where they can perform a D&E, they will not do it if the baby is too big and I was on the cusp. I was put in touch with the doctor at Mt. Sinai who would have been the one to perform the procedure if he were available. I had never met this doctor, and technically I was not his patient, but he spent time calling his contacts, and my doctors, and speaking to me multiple times a day to ensure I got the care I needed. My OB did the same, and since the answer seemed to be the same from everywhere - the baby is too big and we don’t have availability — I was scheduled for induction to give birth at the end of that week.
The doctor recommended I consult with Parkmed, the same abortion clinic I visited in 2020 for a D&C after my second miscarriage. With no hesitation whatsoever, Parkmed said they would be able to do the procedure. In fact, they do this procedure for many reasons even later in gestational age and larger in size so that women don’t have to go through the trauma of laboring and delivering a stillborn child. This is what they do, and they are some of the best in the world. The doctors, nurses, technicians, and care team were so kind; they see pain and fear daily and can perform their job while quietly soothing the pain of a broken mother.
The next morning, one week after I received the horrible news, I went in for the first of a two-day procedure.
After being put under, a doctor would stop my baby’s heart. I sat in the waiting room alone, audibly crying, looking at the other women there wondering what kind of pain they were in. Is anyone else here for the same reason as me? Is anyone else scared? I knew these were the last moments I would feel Jojo’s life within me and I just hugged my belly repeating, “I love you so much, baby girl, I’m so sorry.” As they moved me to the operating table I struggled to control my crying and breathing during my final minutes and seconds with Jojo. The anesthesiologist asked me if I was sure about this. I quietly said, “Yes, she’s not well,” and while we waited the seconds till the drugs put me to sleep, the doctor stood next to me while I cried, patting my head and telling me it was going to be ok. That kindness in that moment as I drifted off will remain in my heart along with the pain of putting my baby girl to sleep.
Later that evening, my girls came into my room to see me when they came home from school. They handled seeing me sad very differently. My 5-year-old was more hesitant, quiet, and thoughtful. I know this takes up space in her mind because she randomly brings up questions of heaven, a concept never introduced to her before this. “Are you always a little kid in heaven? “Is heaven in Unicorn Land?” My 2-year-old said out loud what she thought as she thought it. “You sad, Mommy?” “Jojo not coming anymore?” “Jojo in your belly?” “Jojo in heaven?” “Why?” These sorts of questions still come up, with much less frequency, 3 months later. Now they make me happy because I’m terrified of moving on and everyone forgetting about Jojo.
This was the most painful, heartbreaking experience I've gone through in my life, and I believe this loss will forever change me.
My husband and I miss our baby girl and my daughters miss the sister they never met. I feel guilt and feelings of failure as a parent. But I have not once regretted the decision we made - for Jojo, for our daughters, for the chance to bring another baby to our family in a body that will serve as a vessel to create and express their thoughts and feelings, make friends, fall in love, have a family, and live out their life to its fullest.
I am now 2 for 5 with pregnancy successes. I’ve spent the better part of the last 6 years pregnant, and I am thankful to have two amazing children to show for it. And I’m hopeful that my pregnancy journey does not end here. Maybe this is my decade of child-rearing? I don’t know, but I do know that I’m not the only person whose journey looks like this. And despite everything, I consider myself lucky. I have good health insurance. I have always received excellent prenatal care both from an OB who truly cares about me as a person and a top-notch Fetal Evaluation Unit where they caught the signs of trouble. A genetic counselor who secured my spot in the study that absorbed the cost of the additional genetic test — the only one that could identify the disease. A doctor that I’ve never met who advocated for my prompt care over 4 of the most painful days of my life. Top abortion care a subway ride away. Access to thousands of dollars to pay for an out-of-network abortion up front. The legal right to do this at 26 weeks, 6 days pregnant. And a network of family and friends who love and support me unconditionally. I take none of these things for granted.
There’s a lot wrong with our country right now, but the right to an abortion is my biggest concern.
How can we be free if we’re not free to make the most intimate, painful decisions about the rest of our lives? I feel moved to take some action so that my loss is not in vain, but I’m not exactly sure what that action should be. I decided to start by sharing my story in order to let others going through this — or who have gone through this — know they’re not alone, to shed some light on one of many not so cut and dry reasons people have an abortion, and to force myself into the conversation. I am hopeful that we can continue to speak up and successfully fight for our right to control the paths we take to shape our own future.
I tell my story in memory of my tiniest love, Jojo, whose absence I feel deeply every day. She was due to be born on February 17, 2024.
Dana Kirchoff is the Founder of Choosing Loss, an Instagram page dedicated to sharing abortion stories from moms who terminated wanted pregnancies due to medical issues.