Jane’s Story

My first pregnancy with our first child was going swimmingly. Prenatal testing showed no risk factors, we learned we were expecting a boy, and all our scans and appointments so far had been mercifully uneventful. Then, following a slightly elevated blood test result in January 2021, my doctor recommended moving up my anatomy scan by a couple weeks and sending me to a maternal fetal medicine specialist. In the meantime, we just had to wait. We tried our best not to worry until there was something to worry about, with variable success.

At the beginning of February of that year, I went to the specialist for our scheduled appointment. My husband, Will, participated over the phone because COVID had prevented him from joining any of my prenatal appointments. I remember trying to enjoy seeing our son squirming away on the screen, feeling confused about the position of his feet, and not being aware of how quiet the ultrasound tech was until later. Sadly, the ultrasound revealed that our baby had something called myelomeningocele, the most severe form of spina bifida. This means that our baby boy’s neural tube (which later developed into his brain and spinal cord) didn’t close properly, likely even before I knew I was pregnant, causing the cord and nerves to develop outside of his body in a sac visible on his back. This also caused issues with his brain due to the tension from the spinal cord being pulled through the opening, that could deteriorate further as he continued to develop and grow. Finally, the scan showed that he had clubbed feet, something we soon learned is also a classic symptom of spina bifida. I will never forget sitting in that room, my husband on the phone desperately trying to hear the doctor over the phone and through our masks, and the feeling of absolute freefall as we learned how sick our baby boy was.

After a few more days of testing, consulting specialists, and our own research, we learned what this diagnosis might mean for our son’s life. We learned a lot of vocabulary words: myelomeningocele, chiari malformation, ventriculomegaly, hydrocephalus, shunt. We learned that the level of the lesion on a baby’s spine impacts outcomes for physical functioning. The level of our son’s lesion meant that he’d likely be wheelchair-bound, have limited to no feeling in his lower extremities, have little to no bowel/bladder control, and would almost certainly require a shunt placed in his brain to drain excess fluid that would have to be replaced multiple times as he grew (especially throughout his childhood) or the shunt was blocked, potentially causing infections. The brain and cognitive functioning would be harder to predict before the first year of life, but likely seriously impaired. And all of these outcomes would be after I and our baby were determined to be eligible for fetal surgery (as in, surgery on him while still in utero) in Houston, requiring 3 days of tests and consultations, followed by a major elective surgery involving at least three more weeks in Houston a month or so later, followed by bed rest for the remainder of the pregnancy, followed by a scheduled cesarean delivery at 37 weeks, with a strong possibility of preterm birth. This surgery would not repair damage already done to the spinal cord and nerves, but would potentially prevent further damage and improve postnatal outcomes. “Improve.”

Given the agonizing choice for our son of life or peace, Will and I, in our first and only act of parenthood for our first child, chose peace. 

As if the decision to end a wanted pregnancy wasn’t devastating enough, everything was complicated by our geography and political climate. All our decisions were made under a loudly ticking clock. Even though we learned about our baby’s diagnosis and our options as early in the pregnancy as we possibly could have, at the end of 18 weeks pregnant we were staring down the barrel of a 20-week abortion ban in the great state of Texas (this was months before SB8 and over a year before the reversal of Roe v. Wade and Texas’s trigger law banning abortion). We were lucky to know that we had the finances to travel and referrals for out of state providers for the care we needed, if necessary, but the idea of being forced to travel out of state during a global pandemic and pay considerably more money for access to (at the time) a constitutionally protected legal abortion for a much-wanted pregnancy with medical complications was absolutely maddening. Mercifully, Planned Parenthood came to the rescue close to home.

Then our personal hell literally froze over when winter storm Uri brought snow and ice and power outages and boil water notices and water outages and supply chain interruptions all across the state of Texas. That was the week in which my procedure was originally scheduled. At a time when our windows of tolerance were maybe a molecule wide, Will and I were thrust into a week-long emergency. Although survival mode mostly allowed me to compartmentalize our pain, I was getting more and more pregnant with a baby I knew I was going to lose. I was hiding my body from the cold and my own notice under layers of sweatshirts and blankets, but still had a growing belly, still had pregnancy symptoms, could still feel him moving inside me. Once I knew we’d have to reschedule my procedure, I didn’t know if they’d still be able to do it locally since I’d be a week further along and well beyond 20 weeks. We made it through because of my husband Will’s savviness and winter experience and because we were lucky enough to keep power through most of the week. However, that was a state of extended, torturous limbo I wouldn’t wish on anyone.

Back to Planned Parenthood saving the day. Although their clinic had been closed and damaged when pipes burst, and even though I’d be 21 and a half weeks pregnant, I’d still be able to have my procedure locally (legally, extensions for medical complications were possible in Texas at the time up to 21 weeks and 6 days). I went in two days in a row and have never felt so many complex and intense emotions. Anti-choice manipulation reared its ugly head again and again throughout the process, and the staff handled it all with the utmost calm, direct, nonjudgmental, and supportive professionalism. They explained the process and answered my million questions clearly. They looked me in the eye and explicitly and compassionately clarified when something they were legally required to say was not true. They literally held my hand. They sent me home with our son’s footprint so we could have something of his to hold, to look at, to kiss.

I wanted Will with me more than anything, but even in non-COVID times that would not have been possible. COVID times, however, also meant he couldn’t be in a waiting room, or even in the building. My poor husband and the father of our baby boy had to settle for waiting for hours two days in a row in the parking lot, connected to me only via text message. Mercifully, the building and parking lot are fenced, off the road, and patrolled by a security guard, so the only time we saw protestors (typically just a few at a time), was pulling in and out of the driveway. Despite all these barriers and complications and distance, throughout all of this, Will has been the most incredible strength and support to me and has taken such good care of me and the memory of our first child.

Our son was named Franklin Redman Armstrong. “Frankie” for short. Franklin was Will’s beloved grandfather and Redman was my grandmother’s maiden name. We’d been calling him by his name for about a month when we first got his diagnosis. He died on Thursday, February 25, 2021.

After months of grief, passing Frankie’s due date, and finally feeling ready to try to conceive again, in fall 2021 we found out that I was pregnant with Frankie’s little brother and following a nearly identical timeline to my pregnancy with Frankie a year later. I spent most of the pregnancy pretty disconnected from the experience, in general, though I started taking little steps toward more connection following an all low-risk NIPT and good first scan at the MFM. He consistently measured about a week to two weeks ahead, which also brought some comfort. I fiercely protected my boundaries, continued in individual therapy, hired a doula, and found a pregnancy after loss support group that met through some of the most intense weeks of hitting the same gestation of Frankie’s diagnosis and death, anatomy scans, and first anniversaries. Also, since this was my second pregnancy, but my first living most of my life out of the house, I was navigating new interactions and social situations inside of loss and pregnancy after loss.

Things continued healthily throughout the pregnancy until the very end when I was admitted to the hospital for an induction on my due date in July 2022 because of preeclampsia. I was terrified to go to the hospital to labor and deliver our baby. I was afraid he could still die. I had never been able to picture giving birth or bringing a baby home, so the entire concept felt completely overwhelming, even without the complications. Labor was long and thanks to the support of my husband, our memories of Frankie, our doula, the fabulous labor and delivery nurses, the delivering doctor, and others on our birth team, I made it through and brought our son into the world. I will never forget the cascade of emotions that washed over me as he was placed on my chest: joy, relief, gratitude, grief, exhaustion, love, wonder, and many more. He was finally here. He was healthy. He was ours. 

We named our second son Nolan Pitchford Armstrong. Pitchford is Will’s grandmother’s maiden name, and I absolutely love the subtle and beautiful connection between our two boys and our families in their middle names. We’ve been adjusting to the life of our expanded family and parenting a living child after loss. It’s impossibly hard and wonderful.

I’ve never much connected with the concept of a “rainbow baby,” but of course we have been lucky enough to bring a living child home now. If there’s something that does feel more like a rainbow from my loss, it’s the shift in my professional life. As a termination for medical reasons (TFMR) mom, native Texan, & clinical social worker certified in perinatal mental health, I realized there was a massive gap in needed support and that I was uniquely positioned to work to fill that gap. I opened a private practice, Both/And Therapy, PLLC, where I could provide individual therapy and support groups for others in Texas who have ended wanted pregnancies due to medical reasons. These services aim to support TFMR parents through the unique barriers & grief of ending a wanted pregnancy, particularly in the state of Texas where such care is no longer accessible. I am passionate about building community, eliminating shame, & honoring grief for TFMR families.

I will always love, carry, and honor both our sons in my heart and in our family. And through my work, I will continue to hold close all those other babies who died and their families carrying the grief of TFMR through the rest of their lives. I’m honored to be connected to and numbered among these incredible and loving parents.

Jane wears the rainbow skirt.  She sits in a chair in her son's nursery, holding her young son in her arms.

Jane wears the rainbow skirt.  She sits in a chair in her son's nursery, holding her young son in her arms.

Jane wears the rainbow skirt.  She sits in a chair in her son's nursery, holding her young son in her arms and looking down at him.

Jane's son lays on a blanket on top of the rainbow skirt.  It says he is 1 month old.

Read more about Myelomeningocele here.

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