Imagine being in the midst of your pregnancy, and you learn that your baby is unlikely to live for more than a few fleeting moments after birth. There is no cure for their condition. Nothing can prevent their death.
Most people think they will never be in such a situation. And most people are right. But Kate Cox’s case in Texas this week serves as a stark wake-up call to the nation: This could happen to you or someone you care about, and medical exceptions to anti-abortion laws won’t offer a safe haven.
The Texas Supreme Court on Monday overturned a lower court’s approval for an abortion sought by Cox, who was more than 20 weeks pregnant and facing a life-limiting fetal diagnosis of trisomy 18. This meant that her pregnancy was highly likely to result in pregnancy loss, stillbirth, or infant death. Despite her doctors’ concerns that her pregnancy risked her health and future fertility, the Texas Supreme Court found that those risks were not sufficient to warrant the exception. The ruling said that the doctor requesting the exception “could not, or at least did not, attest to the court that Ms. Cox’s condition poses the risks the exception requires.” The decision came in what is believed to be the first such case since the Supreme Court’s overturn of Roe v. Wade. It won’t be the last.
The case casts a glaring light on the futility and confusion tied to medical exceptions within anti-abortion laws that seek to regulate the most painful pregnancy complications.
Life-limiting fetal conditions, like trisomy 18, are relatively rare (about 1 in every 5,000 babies born each year). Here’s the catch: Those statistics rarely capture the many cases where death occurs before birth. And, with more people having pregnancies at an older age, the odds of facing these conditions are rising.
As a nurse who has worked with people facing these devastating diagnoses, I know that both abortion care and continuing pregnancy with palliative care can be safe options that ease suffering. Expectant parents, even when choosing different pathways, often share a common goal: a deep desire to protect their anticipated child.
Of the more than 20 states enacting abortion bans post-Roe v. Wade’s overturn, seven include exceptions for life-limiting fetal conditions. However, these exceptions are failing.
Kelly Shannon and her family fell between the cracks of Alabama’s exception when she learned that a collection of severe fetal conditions, including a heart defect and large rapidly growing tumor, meant that her baby was highly unlikely to survive after birth.
Shannon wished to pursue abortion care and was supported by her doctor. However, after one hospital committee approved the procedure, a higher-level panel felt that each condition was potentially survivable on its own, so Shannon’s case did not meet the criteria for termination under Alabama law. Shannon had to drive 11 hours and pay thousands of dollars, even after charitable assistance and employer insurance, to receive abortion care out of state.
Shannon’s experience, in a state with an exception for life-limiting fetal conditions, mirrors the experiences of people in states without this exception to abortion bans.
In Louisiana, Nancy Davis described being “thrown to the wolves” after she learned her baby would be born without a skull and wished to terminate her pregnancy. In Kentucky, Heather Maberry could not get abortion care when she discovered that her baby would be born without parts of her skull and brain.
Three women, Jessica Bernardo and Cox in Texas and Allie Phillips in Tennessee, not only faced the tragedy of a life-limiting fetal condition, but also the significant risk of dying themselves due to the high risk of pregnancy complications from their fetal conditions. Even then, an exception to receive abortion care in their home states was denied. Because of this trauma, Phillips is now running for the Tennessee state House of Representatives in a bid to change the severe abortion restrictions.
Shannon, Davis, Bernardo, and Phillips all had to travel great distances and pay large sums to give their expected children the death they saw as most compassionate — abortion care. The Shannon family described this as “the single most painful and traumatic experience of our lives.”
But what happens to those who face a life-limiting fetal diagnosis but can’t travel out of state? One heartbreaking outcome is that they must give birth to dead or dying babies.
Deborah Dorbert was forced to give birth to a baby without kidneys. Although Florida’s 15-week ban includes exceptions for fatal fetal conditions, her doctors declined seemingly due to the law’s narrow exception and harsh penalties.
Samantha Casiano, one of 13 women suing Texas over its strict abortion ban, testified how her baby was born with severe abnormalities, gasping for air and bleeding from the eyes. Overwhelmed during her testimony, she vomited in the courtroom.
Reading through these accounts is undoubtedly difficult. Now, imagine living through them. Casiano reports vomiting on a regular basis due to the trauma, and Dorbert says she is struggling with anxiety and depression that has kept her from returning to work. Both families described the experience as “torture.”
Their testimony should resonate widely, since mental health conditions, including postpartum depression, are the leading cause of maternal death in the U.S. These consequences are particularly serious for pregnant individuals from historically marginalized groups, placing at greater risk people who already experience high rates of pregnancy-related illness and mortality.
I am not saying that abortion care is the right choice for everyone facing life-limiting fetal conditions. Pregnancy continuation with palliative care can be a beautiful and compassionate choice that I champion through research, advocacy, and clinician education.
Laws forcing people into this care, however, add avoidable tragedy to these families’ inevitable loss. It is well established that people who can obtain the care they seek have better health outcomes than those who are denied their options.
In the end, Kate Cox had to travel out of state for the necessary care due to the ineffectiveness of medical exceptions in anti-abortion laws. Her Texas care team encountered threats from the state attorney general who vowed to prosecute any providers involved in her procedure, if the lower court ruling had permitted it.
As states persist in tightening abortion restrictions, and with a potential national ban on the horizon, it is crucial for policymakers and voters to recognize the inherent flaws in relying on medical exceptions within anti-abortion laws. The harrowing experiences of Kate Cox, Kelly Shannon, and others vividly illustrate the inadequacy of such provisions for life-limiting fetal conditions.
Take it from Rebecca Shrader, a devout Christian who went through two pregnancies with life-limiting fetal conditions. “I chose life for two babies, knowing they would die,” she said. “I do not believe that should be a choice women are forced into making.”
Abigail Wilpers is an assistant professor at the University of Pennsylvania School of Nursing and a senior fellow at the Leonard Davis Institute of Health Economics.