The Choice We Didn’t Want to Have to Make: My Journey Through Pregnancy Termination
“I’m sorry… I just want everything to be ok.” No one could tell me that it would.
My husband and I decided to start not-trying-not-to-get-pregnant in October 2019. I had my IUD removed and we figured it would take at least a few months, especially after I reviewed the process of fertilization; the tens of thousands of sperm that start their journey bright-eyed and rosy-cheeked and end up a dozen or so haggard, Brad-Pitt-from-Seven-Years-in-Tibet-types miraculously stumbling upon Big ‘ol Mama Egg. I got pregnant the first month.
I took a pregnancy test on December 7 after Jeff had left for work. I had a wide-eyed, “holy shit” moment but felt a lot more calm than I thought I would.
That evening when Jeff finally stumbled upon the stick I’d left in the bathroom, he stated immediately, “it’s a girl.” His highly scientific reasoning was the presence of a bright pink sunset on his way home. I reasoned, ineffectually, that most sunsets are pink.
My parents found out a couple weeks later when mom super-casually confronted me about my declined drink offers at the various holiday gatherings we’d been attending. My shit-eating grin (her words) gave me away. I don’t know if I’d ever seen her so giddy.
I had my first OB appointment at 9 or 10 weeks.They did routine bloodwork which included carrier screening for two of the more common rare genetic diseases: cystic fibrosis and SMA (spinal muscular atrophy). One morning a couple weeks later I got a call that I was found to be a carrier for SMA.
Apparently about 1 in 50 people in the U.S. are carriers, meaning that instead of inheriting two good copies of the SMN1 (survival motor neuron) gene- one from each parent- I got only one. Which is fine for me, because the body only needs one to program the production of the protein which that gene codes for.
A gene is a “unit of heredity,” which cluster together to form chromosomes. Our genes are redundant sometimes; most of us are walking around with two copies of each gene, since we inherit a set of 23 chromosomes from each parent, which pair up when sperm meets egg for a total of 46.
The nurse asked me to have my husband come in to have his blood drawn to be tested for SMA carrier status as well. Because, although having just one SMN1 gene was no big deal for me, if Jeff ALSO had only one SMN1 gene our baby would be at risk for having none. Which is bad. Because no SMN1 gene = no code-writer for a protein that happens to be essential for muscle function.
I called Jeff at work and met him at the lab on his way home that day. We took a stroll in the park on our way home as the sun went down. I explained the importance of checking parent B if parent A has carrier status, but I didn’t feel too uneasy. I reasoned aloud that it was pretty unlikely we both were carriers.
I was getting impatient when we didn’t have his results almost three weeks later. I wanted to tell more close friends our good news, but this little question mark was hanging over our heads and I wanted it put to rest. I left a message with my OB office to inquire.
The next evening Jeff got on a plane to Colorado for a bachelor ski weekend. I dropped him off at the airport, and as I watched him walk into the terminal and got back into my car I saw my OB’s office was calling. Jeff was also a carrier. They were referring us to a neonatal consultant to discuss next steps.
I felt like I’d fallen through a trapdoor. I immediately called my mom in tears. I knew from my nursing school genetics class that there was still a 75% chance that baby would be fine (50% it would have carrier status like us + 25% it inherited both our good copies). But the 25% chance it could have SMA felt painfully, fearfully significant.
Jeff was on his trip for the next 5 days. I told myself that I wouldn’t volunteer the shitty news, but that if he asked about results I would share. I spoke to the neonatal consultant a couple days later. He recommended an amniocentesis to obtain baby’s genetic information, as I was approaching 16 weeks by this time. Chorionic villi sampling (CVS) would have been the method of DNA extraction if it were earlier (10–14 weeks).
He explained the small risk of miscarriage but stated he’d never had a patient experience complications, and that it’s unclear in the documented cases whether the miscarriage was even related to the amnio.
He was open about the fact that, based on severity of results, some families choose to terminate the pregnancy. I didn’t consult with Jeff before making the appointment, but I knew I didn’t want to live with the unknown.
A day or two before he was to come home we were face-timing and Jeff asked if I’d gotten a call. I told him our news, with a delivery that in retrospect was all bleakness and no optimism. He became defensive and seemed to reject testing of fetal DNA; “why does it even matter!?” He later explained that it felt like I’d already given up on our baby.
Obviously, I fervently hoped/ prayed/ crossed all my appendages that this would end up being a bad dream. That we’d get testing and find out baby was going to be normal and healthy and we could go back to the journey of joyous preparation. But as someone who has to have a plan for every potential outcome in every possible scenario, I spent a lot of time thinking about what we might do if results came back that we didn’t want. And coupled with the consuming worry that our baby would be affected, was the fear that my more conservative-leaning husband would stop loving me if I decided I wanted to pursue termination.
I imagined him unable to reconcile with my decision; he would leave me, move back to Colorado and I’d be by myself. No baby, and no partner. It sounds absurd when I say it now, but at the time I didn’t know if he would see things as I did.
About a week later we headed to the perinatal clinic. After a quick consultation in the doctor’s office, I had an ultrasound to confirm baby’s measurements and placement. The emotions were complex and almost contradictory; the joy and fascination of seeing our little one up on the screen, paired with the gravity of why we were here in this office. The fear of what we might find.
The tech asked if we wanted to know the gender. I looked at Jeff, and then told her that we weren’t sure. From the start, I’d said I wanted to be surprised. And Jeff had laughed, wondering why anyone wouldn’t find out. So I asked her to write it down in an envelope that we could open up, maybe, hopefully, when we got good news back.
The three of us laughed a little, I tried to enjoy the moment. The doctor came in and painted my belly with betadine. He prepared his needle and test tubes. I reached for Jeff’s hand, sitting behind and to my left.
It was a tight little pinch and I tried to keep perfectly still while the doctor drew up the fluid. The transducer stayed in place to keep an eye on baby, and I focused on the screen.
I stared at our little one and felt its helplessness and mine. Tears welled up that couldn’t be swallowed back. The nurse handed me a tissue as the doctor finished up and the tears kept coming. “I’m sorry… I just want everything to be ok.” No one could tell me it would.
We lived the next nearly 3 weeks feeling like we were stuck on the edge of a high dive. Results came back on a Friday morning. They were confusing. Or maybe I had on a veil of denial. We couldn’t get ahold of anyone from the lab to interpret our results. Finally I called my regular OB clinic to see if someone could provide clarity.
Results said SMN1- 0 copies, SMN2- 1 copy. When one of the doctors, very supportive and kind-voiced, called me back I said, “so, zero SMN1 is good, right? It doesn’t have any of the bad copies?”
“No, she said, “that’s bad.” Our baby inherited none of the SMN1 genes that produce protein necessary for muscle function. She let me cry, let me ask questions that I knew she couldn’t answer. She said that she could not have been more sorry for what we were facing.
I ended my work day early, called my mom on my drive home, and flew out of the car into Jeff’s arms and between sobs regurgitated what the doctor had said.
On Monday we were finally able to secure a referral to a genetic counselor at Magee Womens Hospital in Pittsburgh. During our virtual appointment she said our baby would be classified as having SMA type 1- the most severe. Given that it had one copy of SMN2, it would make a tiny bit of muscle-building protein. Probably enough to survive until birth. It would live to 6 months or so, gradually losing critical muscle function in the ability to move, swallow, and finally, breathe.
She explained our options for the pregnancy. She said there is gene therapy available, for $300,000 per month, that might prolong our baby’s life to 18–24 months but wouldn’t be a cure.
Jeff and I talked it through but we didn’t need to debate. We had two choices, and they were both completely heartbreaking. But we knew which one was ours.
I made the phone calls and arranged for the procedure to end my pregnancy. Another grim “sub-choice” we had to make was whether I would undergo a D&E (dilation and extraction), or be induced and go through the labor process.
Though the latter meant we would get to see and hold our little one, the thought of what it would entail from start to finish for both of us, as well as the physical risk to me, made us quickly opt for the former.
The soonest they could get us in was the following Thursday to begin the two-day procedure. I had to do a self-muted conference call with the surgeon and other patients for “counseling” according to Pennsylvania’s 24 hour waiting period, which took all of 10 minutes and did nothing to discourage our decision. If anything, it made continuing the pregnancy sound riskier to me than I’d really considered.
I should mention that this was happening in late March when COVID cases were skyrocketing, hospitals were either overrun or preparing to be, and counties were mandating only essential travel. On top of our grief and anxiety I was worried they would halt the procedure, or that we wouldn’t be able to get where we needed to go.
Each day I felt ripped in half; loving and wanting to nurture this little life growing in me, while just wanting all this behind us. (Of course at the time, in the midst of trying to appear fine and dandy to all the people for which I had to be fine and dandy, I wasn’t ready to know that “all this” would never really be behind us.)
Jeff and I checked into our hotel before my day 1 appointment. It was April 1st. We sat on the bed together and cried. We said our goodbyes to the baby we would never meet. I hoped aloud that it somehow knew just how much we loved it, how we wished things were so, so different, and how it would always live in our hearts. It felt so surreal.
A little later, I met with a surgeon who reviewed what would be happening and what prep and recovery would look like. She also asked me about my family, how Jeff and I were doing, and if we wanted footprints done, which I hadn’t known was an option. It gave me comfort to think we could have something tangible to remember our child, who felt very real to us but whose existence would be unmarked in many ways.
She also asked if we wanted to arrange a cremation so that we could have the ashes. I hadn’t even thought of that and said I would discuss with Jeff.
She then showed me to the exam room and inserted several laminaria sticks into my cervix which would absorb liquid and expand, dilating it a few centimeters for the procedure the next day, decreasing the risk of long-term injury. This took about 5 minutes. The surgeon was very gentle, and encouraged me to concentrate on wiggling my toes to distract from physical and emotional discomfort. She gave me some ibuprofen, and I left.
Jeff and I took a gentle walk around town and ate dinner. The cramping came on gradually, and ended up being the closest thing to any pain I had from the procedure.
We talked about the option of cremation, and decided we would pursue it. Looking back on that day, I’m really glad we did. I called a funeral home that we saw on our walk and that I remembered passing by dozens of times on my way to a friend’s apartment to pre-game Friday nights while I attended Pitt. (Life is strange).
I made arrangements to have remains picked up, prepared, and shipped to us. Again, it all felt surreal. But I was glad to have a task, something to focus on that might give comfort in the future.
I was instructed clear liquids after midnight, and nothing by mouth after 5am. We got to the hospital at 7 and checked into the OR waiting room. Luckily Jeff was allowed to come into pre-op with me. They started fluids, we sat in mostly silence.
The woman in the curtained room across from mine was wailing intermittently. I gathered from her loud phone calls that she had some sort of large tumor in her abdomen. I thought about how many people inside that hospital were facing something even scarier than me at that same moment.
My nurse anesthetist came by, and then the rest of the team. I peed, they gave me a light sedative, I gave a kiss to Jeff, and was wheeled into the OR.
Someone explained that they would be strapping down my arms to prevent any involuntary movement, and their echoey voice is the last thing I remember before waking up in post-op, groggy and dry-mouthed. After a few minutes the nurse helped me put on a pair of mesh panties with a big maxi pad.
I was then escorted into a recovery room for a short time, given ice chips, and told I could change back into my clothes. The tech escorted me downstairs and out to the car where Jeff was waiting.
I guess I would describe the sensation of that first day as numb. I wasn’t in denial, I knew fully what had just happened, but I didn’t (couldn’t?) feel any strong emotions. The bleeding was as I’d been prepped, similar to a heavy period initially. Fortunately I didn’t have post-op pain.
The following days are kind of a blur. There were tears, texts, ice cream, cards, Netflix, and more tears. I can’t fully describe the sensation of our loss. We felt bewildered. We felt cheated. We felt betrayed (by God? By genetics? By some cruel cosmic flip of a coin?). We felt so, so sad.
3 days later I found another use for my bags of frozen corn- cradling my breasts to discourage lactation. At first I chalked the oily liquid on my shirt up to spilled drops of my moisturizer. But the next day it couldn’t be denied; spots on my chest appeared out of nowhere and kept growing. I wanted to apologize, “you’re doing just what you’re supposed to, ladies, but I’ve got nothing for you. Sorry.”
I felt myself hesitating to wear a tight sports bra for the next week as instructed. A very real part of me didn’t want this validation of my child’s existence to go away, no matter how sad it made me. What would I have left, physically, when my body returned to normal?
Around that same time we decided to open the memory box that the hospital had given us with the footprints. Inside, along with a sympathy card and some pamphlets on grieving, was a pair of perfect, tiny prints in purple ink, no more than an inch long. They were beautiful. They were also painful to see.
We then decided together we would open the envelope that the ultrasound tech had given us at the amnio. Jeff stood by his prediction, and at the beginning I had none. But as my pregnancy had continued, as I envisioned our little one, I thought of it as a him. It was subconscious at first but firmly rooted.
I pulled the post-it out of the envelope; “it’s a boy.” I cried. Again. It made our loss feel even more concrete. A little boy. He would’ve been tow-headed like Jeff and I both were. He would’ve had the sweetest smile. He wouldn’t have lived to walk. He had been inside me, and now he was gone.
We had started preparations for the baby’s room but hadn’t gotten too far. A coat of paint, a glider chair, a colorful rug, some clothes hung up with the tags still on, and a stack of nursery-esque artwork I’d been collecting somewhat aimlessly for years.
After the procedure (what I’m calling it; any simple-sounding name for something that wasn’t at all simple ends up sounding flippant, but I guess I have to refer to it somehow), I kept the door closed and tried not to go in unless I had to quickly retrieve something from the closet. But about a month later, my husband went in and I followed.
He laid down on the floor on his back and I joined him. Even the cat darted in and curled up on the glider. We could look up and through the window behind our heads into the blue-gray evening light and every 20 seconds or so see a glimpse of the moon in a gap in the fast-moving clouds. It was maybe the first time I felt some peace since finding out we were both carriers.
It is true what people say about grief, that you have to give it time. Of course, time is a formidable thing when you feel like you’ve experienced something awful and now a heavy, cold mist darkens everything. Even time itself is a weight.
In that initial zombie-like phase of grief I don’t know what I would’ve done without Jeff, my parents, and maybe most of all, the women closest to me. Their unconditional empathy made me feel sheltered and held up. There was no toxic positivity. No presumptions about how I must feel or need. Just a warm, supportive presence of love, letting me know they’d be there whenever I was able to pull some of the clouds aside and peek out.
The raw, stop-you-in-your-tracks phase of grief slowly wore off. I felt so cliche, but it took me awhile to be able to walk past the Target baby section without averting my eyes. Some days it would come roaring back, the deep sense of missing, of an absence. But very gradually, I felt like I could regain function and spend less time on autopilot.
I had enough energy and thought to plan a meal. Once in awhile I could be present in an enjoyable moment without sadness tugging me out of it.
As the summer continued I started to look ahead to my due date of August 12. In the blissful beginning I had hoped that maybe baby would come 2 days early, on my parents’ anniversary.
I thought about how we would have been researching a birthing plan, or taking childbirth classes. Maybe we’d have found a doula. We’d be hurriedly baby-proofing the house, buying carseats and a stroller and packing a go-bag for the hospital. Instead, our lives looked the same as before I was pregnant. It was painful to compare our present to that alternate reality I’d envisioned.
We planned a long weekend to the finger lakes over the due date, and it was just the quiet, quality time that we needed. Sad, reflective, but also affirming. When we got back, the two of us and my parents scattered our son’s ashes in the field on their property where we were married. A place to honor pain as well as happiness, and guarded by so much love.
We love our baby, we love the little life we made but did not get to keep. And I do not mean to imply that there would not also have been love if I’d chosen to give birth.
I could have held my son in my arms, could’ve studied his face and figured out which one of us he resembled most. Could’ve seen him smile, watch him sleep, soothed him when he cried. I could’ve wrapped my mind around him as a tiny person outside of me. I also would have watched him suffer and die.
A friend and fellow nurse (often the people whose opinions I trust most) told me we made a “merciful modification of the timeline.” Merciful to us, and, I believe, to him.
Another less empathetic former friend reasoned that I “shouldn’t put science and diagnoses before what God is able to do,” that I should hold out for a miracle.
It’s a strange thing to try and address the God role (or lack thereof) in this because everyone lives and decides by a slightly different set of preconceptions. But I gave it some thought. Let’s say God does indeed engineer every minute detail of our biology, down to the fate of our gametes.
If God made us both carriers, and made an affected sperm join with an affected egg, and made that egg implant in my uterus and grow and multiply then it was God’s intention that Jeff and I be its parents.
And if God made us its parents, then God knows our convictions and motivations, and God knows what our hearts would want (and not want) for our child.
I told that friend, after several deep breaths, that the blessing- the “miracle”- in this is the realization that, although this baby wouldn’t survive, wouldn’t thrive, I can. I can be a mother in multiple forms. I can be a nurturer. A nurse. An advocate. A leader. A wife. A daughter. A friend.
Sampson will always be our first child. We are hopeful we can have more, that we will get to raise. And we will tell them about their brother.
As we navigate our next months and years, we will have in us more strength, more humility, and more empathy. Those are the things that his life, and his loss, gave to us.
