Reproductive Rights are Not Black and White
Imagine waiting your whole life to become a mom only to have that reality become nothing like you expected—in the worst way possible. Last year was supposed to be the year our family became complete with the arrival of our daughter, Brynn. Instead, it’s the year that shattered our world and left a permanent Brynn-shaped hole in our hearts.
We found out around 26 weeks that she suffered from micrognathia (an underdeveloped jaw), clubbed feet, and a small stomach. Without further testing, there was no way to know the extent of her condition. We lived in limbo; everything from minor developmental delays to a fatal anomaly was within the broad realm of possibilities.
Due to her condition, I developed polyhydramnios (excessive fluid around her), and it became so severe I was admitted to the hospital for monitoring at 31 weeks. Over the next week, our conditions only worsened. In pregnancy, a normal amniotic fluid index is between 5cm to 25cm. Between 31 and 32 weeks, my fluid level hit 50cm. On March 21, 2023 Brynn Everly was delivered at 32 weeks in an OR filled to the brim with doctors and nurses.
I will never forget the moment I realized we were living through the worst case scenario. Instead of newborn cries, we were met with excruciating silence. In an instant, any remaining glimmers of hope for a semblance of normalcy vanished. Our reality crashed into me, filling every nook and cranny within me with fear and agony where fragile hope had once been.
Brynn was intubated, but her condition was dire. I got a single glimpse of my daughter before the care team whisked her to another room. We’d agreed my husband would go with Brynn, and my sister would come meet me in recovery. I spent the next two hours glued to my phone, awaiting updates in a recovery area. I heard other moms and their newborns’ cries while wondering if I’d ever get to hear my daughter’s.
Finally, I was wheeled through the NICU to see her on the way to our room. It was an excruciating juxtaposition to feel equal amounts of love and helplessness simultaneously. On a ventilator, with countless wires crisscrossing her body, covers over her ears, a tiny hat covering her eyes—it’s an image forever engrained in my memory.
To watch your tiny, beloved newborn lay motionless, unable to hold or comfort her, knowing medicine and machines are keeping her not only comfortable but alive is to know a kind of agony that becomes etched into the fabric of your being.
As the hours passed with little to no changes in her condition, that agony seeped into every part of me until I felt numb, like I was no longer living my life but watching it unfold, refusing to believe this was our reality.
For 30+ hours, our sweet Brynn fought valiantly while her doctors and nurses worked tirelessly. Nothing improved her condition, and it became clear nothing would. I’ll forever be haunted by the moment my husband and I had to make the single most heartbreaking decision of our lives. Deciding to let your child go is unspeakably painful. The first time I held my daughter we were being wheeled to a private room to say our goodbyes. How do you tell your baby goodbye before you really even get to say hello? How do you convey a lifetime’s worth of love in a matter of minutes?
It is indescribably painful to watch your child’s life slip away before it has the chance to start. To hold the most innocent of humans in your arms, knowing the only way to ease their horrifically unfair suffering is the one thing that takes them away from you forever.
Months later, we received the results of her genetic tests. She had nemaline myopathy—a hereditary neuromuscular disorder. It varies in severity, but the specific mutations my husband and I passed to her were the most severe and are fatal. We now know any child of ours has a 25% chance of inheriting the disorder and suffering the same fate as their sister. It might be easy to think 25% isn’t much, but from the perspective of a parent who has already endured the worst, it’s an astronomical risk.
If you were told there’s a 25% chance you’d lose control of your car and die in an accident tomorrow, your plans would understandably change. For us, that change in plans means using IVF to conceive another child. Genetic testing will allow for us to avoid transferring any embryo carrying the mutated genes that would cause nemaline myopathy. It is unconscionable to think embryos with a fatal disorder should be transferred.
For families like ours, as well as countless others whose path to parenthood requires IVF due to infertility or other issues, the loss of IVF services is too painful to fathom. More than 8 in 10 adults in the U.S. support access to IVF services. Yet all but two Republican senators present voted against a bill to protect IVF twice. It’s easy to say, or to see politicians say, “IVF won’t be banned! Everyone supports it!” But it’s also important to understand there does not have to be an outright ban for IVF to be threatened, interrupted, or potentially halted, as the country witnessed with the Alabama Supreme Court decisionearlier this year. The language in Project 2025 regarding fetal personhood has alarming implications (one such example: “From the moment of conception, every human being possesses inherent dignity and worth, and our humanity does not depend on our age, stage of development, or abilities.” – p. 450).
I have been in the uniquely painful position of both watching my newborn baby die and having embryos created with IVF be unviable due to an abnormality discovered through genetic testing. It is devastating to learn an embryo is unviable. But it pales in comparison to the loss of a living child.
The IVF process, for us, has felt like a marathon we’re trying to complete by taking two steps forward and one step back while also not even knowing where the finish line is or if we’ll ever get there. Families utilizing the IVF process are going through absolute hell for the mere opportunity to grow their family; it is the epitome of cruel to make that journey any more difficult by opening the door for fetal personhood to disrupt fertility clinics’ services.
Like it or not, reproductive healthcare is not a black and white issue. Access to essential reproductive tools and services – contraception, abortion, IVF – is a necessary part of life.
Prohibiting abortion for some reasons and permitting it for others is exactly why abortion bans do not work. Women should not be on the verge of death before life-saving care is attainable. Doctors should not have to delay or deny care—including D&Cs for miscarriages—out of concern for their own futures. Women should not be at risk of bleeding out after giving birth because the medication and tools necessary to help stop it are not readily available. Families faced with the devastating news of nonviability during a pregnancy should not be without options. Unfortunately, these scenarios are a reality in Texas.
In a post-Roe world, to ban abortion is to accept that the loss of access to necessary healthcare inevitably costs women their fertility and lives. In 2023, a lawsuit—Zurawski v. State of Texas—was filed on behalf of two Texas OB-GYNs and five Texas women who were denied critical abortion care due to the state’s abortion bans, leaving them to face risks to their health, fertility, and lives. The lawsuit grew to 22 plaintiffs, including 20 women who were denied abortions in the midst of devastating medical conditions or emergencies. The lawsuit sought clarification from the state of Texas regarding the scope of the “medical emergency” exceptions under the state’s abortion bans. As the bans stood, there was no guidance for medical professionals, leaving them to fear facing fines, prison time, and loss of their medical licenses if they performed abortions. On May 31, 2024, the Texas Supreme Court ruled on the case, refusing to clarify the exceptions.
As a result, the bans stand as written. Chapter 170A of the Texas Health & Safety Code prohibits abortions outright, except in certain circumstances. Section 170A.002 prohibits a person from performing, inducing, or attempting an abortion. In order for the exception to be met: (1) the patient must have a life-threatening condition and be at risk of death or “substantial impairment of a major bodily function” if the abortion is not performed, (2) a licensed physician must perform the abortion, and (3) must try to save the life of the fetus unless this would increase the risk of the pregnant person’s death or impairment. (Note: “substantial impairment of a major bodily function” is not defined.)
By refusing to clarify the language in the bans, the Supreme Court of Texas has turned their backs on the people of this state. Chances are, regardless of your race, gender, beliefs or background, that you are, know, or love a woman of childbearing age who could potentially be affected by this state’s near-total abortion ban.
Countless nuanced complications can arise during a pregnancy; the last thing someone facing a life-threatening situation or heart-wrenching news should have to deal with is the extra layer of confusion caused by navigating an abortion ban in their state.
Approximately 1 in 4 pregnancies ends in miscarriage. In the event a future very-much-desired pregnancy of mine results in miscarriage that requires medical attention, I could be denied care, like those plaintiffs and countless women across this state have been. Treatment denied or delayed until I’m closer to death. It’s horrifying to fathom such a situation, but it’s also impossible not to consider the possibility when you’ve already been through immense pregnancy/birth/loss trauma.
By the end of my pregnancy with Brynn, suffering from such severe polyhydramnios was dangerous. At the time, my concern was Brynn; I didn’t give my own well-being much consideration. Now, looking back, it’s terrifying to think it could have led to a situation where my living child is left without a mother.
The reality is, if I tried to carry another baby to term with the same disorder as Brynn, he or she would have zero chance of survival and a short life filled with pain. I can barely let myself ponder the prospect of not only letting our deeply beloved baby suffer, but also enduring the enormous toll that kind of trauma takes on a person and family all over again. I can’t say with one-hundred percent certainty what I would do if we found out another baby had nemaline myopathy, and honestly, unless you are in the situation yourself, you truly don’t know either. But I do know it’s incredibly unjust that I wouldn’t even have the option of abortion care here. In choosing to avoid potentially risking my life to put a desperately-wanted baby through hell before dying, I would be forced to flee this state for care. In a situation where the outcome is devastating no matter what, it is cruel beyond measure to inflict more pain upon families already facing an unimaginably tragic situation.
Sending abortion decisions to the state level is not an alternative to the Roe decision. Why should geography dictate one American’s fate differs from another’s? Only 26 states allow for citizen initiated ballot measures. Even in states like Arkansas, where they are permitted, and more than 100,000 residents signed a petition to certify the ballot measure to vote on abortion rights, the secretary of state cited a failure to follow procedures relating to paid canvassers to invalidate 14,000 signatures, putting the total short of the required signature threshold. That decision refutes the will of those 100,000+ residents.
The choice to grow a family or not grow a family is deeply personal and can be incredibly complex. Nobody outside of a family and their medical provider deserves a seat at the table when it comes to making that decision. As a nation, we might be divided in a lot of ways, but when it comes to reproductive rights, Americans are largely united in their support of access to IVF, abortion, and contraception, and it’s imperative we vote accordingly.
By: Caitlin Rudine
SOURCES:
https://www.pewresearch.org/short-reads/2024/03/25/what-the-data-says-about-abortion-in-the-us/#faq
https://statecourtreport.org/case-tracker/lepage-v-center-reproductive-medicine
https://ballotpedia.org/States_with_initiative_or_referendum