I have been struggling to process the news of Texas SB 8 becoming law and the Supreme Court of the United States declining to block an unconstitutional attack on all who are capable of conceiving, regardless of gender identity. As a native-born Texan who has, perhaps somewhat naively, always taken great pride in her state, I have begun to recognize the betrayal I am feeling and persecution I am experiencing from my fellow Texans who are now deputized against me. I have also been able to recognize the incredible privilege I have as a cis-white female in the novelty of feeling criminalized by my government and fellow citizen solely because of who I am. The deputization of citizens against others is not unprecedented. Mississippi’s 2016 HB 1523 legalizes discrimination against LGBTQ+ people and the right to sue and monetarily benefit from anyone who interferes with said discrimination. Similar to SB 8, legal technicalities of who can sue and be sued precluded the blocking of this unconstitutional bill by the court system.
More so than for myself, I am grieving for my patients. This bill immediately conjures vivid details of every patient I have been involved with whose story would look very different had this bill been law when I worked with them. I am mourning deeply for a family I worked with who have had two boys with a rare genetic disorder. They watched their first son die a slow and painful death in the NICU because of his condition-related complications. Their second son was also affected, and this self-described Christian couple was able to gift mercy to him with a painless existence through termination at 19-weeks gestation. Both of those boys were so very loved; how must that family feel right now?
Currently, our team is working with a family who, after delivery, discovered their son had multiple anomalies that will have a large impact on his quality of life should he survive this critical period. They are facing the agonizing decision of withdrawing care. How is this outcome preferred to an alternative of withdrawing care prior to delivery via abortion? I am haunted by the impending suffering from the looming reality of this tragedy that will be played out over and over in NICUs across the state in the upcoming months, not to mention the millions of dollars of NICU bills that will bankrupt families or go largely under-reimbursed by Texas Medicaid and financially cripple the hospitals in its wake.
I shudder to think of how the foster care system, already overwhelmed, will manage to take on the increased number of children who have serious chronic health care needs or simply could not be cared for by their parents. These facts do not change regardless of the timing of the person’s decision to relinquish care--a decision resulting from an awareness and recognition of their inability to adequately provide that care themselves. I reflect on the medically-devastated baby I saw who was born to a 15-year-old child raped by her father, the genetic condition a consequence of the incest. I dread the impending increase in the number of patients I will have with the same traumatic story.
The government encroaching into medical decision-making isn’t new, as any genetic counselor is well aware. The aforementioned scenarios are not new; my Instagram and Twitter feeds have been flooded with equivalent tales of devastation. What is refreshingly new to me is the push for citizens to advocate for others and connect them with resources, just like genetic counselors are familiar with doing for our patients. The organizations of Plan C, Abortion Finder, and Fund Texas Choice are three of many who are working to keep people who need abortions connected with ways to do so. The website prolifewhistleblower.com that was set up by Texas Right to Life to accept anonymous tips on violators of SB 8 has been shut down. Last week, the Justice Department filed a lawsuit against Texas and has asked for a preliminary injunction that would prevent enforcement of SB 8, if granted. My concerns remain, and yet, my feelings of desolation and hopelessness are beginning to soften as I see the efforts to confront and eliminate this injustice.
Crescenda Uhles, MS, CGC is a pediatric genetic counselor at Children’s Medical Center in Dallas. Her research interests include Whole Exome Sequencing data, phenotyping of rare conditions, and cost savings to families and hospitals generated by genetic counselors assisting with insurer coverage of genetic testing.