A Birth Plan for the Dying

We have a plan for the day you are born and the day you die. 

We can make you breathe—or at least try to—when your lungs fail and your blood can no longer clot. At the Texas Medical Center (TMC) in central Houston, we repair spinal defects before birth and replace hearts after a mother’s cardiovascular system collapses. I have watched doctors bring women back from the dead. It is an astonishing and beautiful thing.

But when your baby is diagnosed with a lethal anomaly, we cannot help you. Not because we lack the training or the skill. Because the law forbids it.

If you learn about fetal anomalies only online, it might distort your sense of scale. Around 3 percent of pregnancies are complicated by a life-limiting anomaly. At the TMC, that means roughly 800 families a year—or about two a day—learn that their child will not survive birth or will die minutes after. As the region’s referral center, we deliver this tragic news more often than our colleagues at other facilities.

We are not afraid to weep with our patients. A diagnosis like this is a fault line; there is life before and life after. Some choose to continue their pregnancies. We do everything to help them deliver safely. This choice is not without risk. These mothers take on the dangers of delivery—eclampsia, hemorrhage, disseminated intravascular coagulation—to spend a few moments with their dead or dying baby.

Others are willing to take on the risks of pregnancy only if there is the possibility of a living child on the other side. This is a more than reasonable position, especially as Texan women have poor maternal health outcomes overall. According to recent federal and state data, the Texas maternal mortality rate is higher than the U.S. average. And Black women in Harris County die from pregnancy-related causes at nearly four times the rate of their white counterparts.

You can study the data for years. Read the journals. Analyze the case reports. Until the very real threat of dying while giving birth starts to feel abstract, like something that happens only to someone else. Spend a week on a maternal-fetal medicine team at the TMC, and that distance disappears. The only thing that matters is the patient in front of you, who cannot get the care she needs.

ABORTION CAN ALSO SAVE LIVES.

I remember the patient who destroyed my sense of scale. The shape of her red stud earrings. The chocolate from Trader Joe’s that her husband piled in the corner of her room. The bright smile she beamed at the entire team even when we woke her up at 5 in the morning for pre-rounds.

It wasn’t her first pregnancy, but it was her first real chance at a live birth. Before being transferred to the TMC from a rural Texas hospital for this pregnancy, our patient had previously endured multiple miscarriages and several failed rounds of IVF. She wanted this baby more than anything. More than she wanted to avoid the serious risks to her own health—an autoimmune condition made her more likely to miscarry and more likely to experience serious complications—or the obscene mountain of medical bills piling up in her mailbox at home.

We realized something was wrong near the end of her first trimester. The resident couldn’t find the baby’s kidneys on ultrasound. We already knew the baby was small for its gestational age, but we’d attributed the growth restriction to our patient’s existing autoimmune disorder. This new knowledge, combined with a low amniotic fluid index, sent up several red flags at once. When the attending took the probe, her face went white.

For most parents, an ultrasound is pure joy. A first glimpse, a tiny nose that looks like dad’s, a photo to send to the family group chat. But when an ultrasound reveals a lethal fetal anomaly, each image is the unwinding of a miracle.

Our attending clicked through the frames again. The resident was right. There were no kidneys.

In a healthy pregnancy, fetal kidneys create the amniotic fluid that protects the body and allows the lungs to develop. Without this fluid, the lungs fail to develop properly. Even worse, without this protective amniotic buffer, the fetus is slowly crushed in the womb. 

Most of these babies die before birth. Those who survive delivery gasp for air until they suffocate in their parents’ arms. When we explained this to our patient, she howled as though someone had trampled her heart. Her husband slumped at the end of the bed, shredding a chocolate wrapper between his fingers. Our attending held back her own tears until the husband asked if he could donate his kidneys to their baby. As she explained that surgery couldn’t fix this, her voice shook. 

Then, the parents asked whether this meant they qualified for the narrow exceptions to Texas’ abortion ban, especially given the autoimmune disorder that had brought the mother to the TMC in the first place. But there is no exception in Texas for lethal fetal anomalies. And our patient was too sick to travel out of state.

When we left the room, the parents and the entire medical team had been stunned into silence. I remember thinking that it couldn’t get worse than that heartbreak. Until it did.

Days later, the patient’s room was empty. I asked the resident what happened to her. Overnight, in a cruel turn, her own kidneys had begun to fail. She was transferred to the ICU, and I started working with another team in the hospital. I never learned what happened next.

Every morning after, I imagined running into her husband in the elevator, standing with his usual bag of snacks, telling me that his wife made it through the hellish ordeal. But I never did.

I grew up believing abortion was a sin. My parents raised me in a conservative religious community just outside Dallas, where I was taught that hormonal contraception was an “abortifacient” and that women who defied church teaching might be punished with miscarriages.

The more I learned about medicine—and how quickly a healthy pregnancy can turn deadly—the less certain I became about the worldview I’d inherited. When I discussed the case of the patient with the autoimmune disorder with a physician from the community that I grew up in, he agreed that ending the pregnancy was likely safest, before adding that women “shouldn’t use abortion as birth control.”

Others from my past have been less generous. They now accuse me of defending “baby killers,” or simply of using a tragic case—a woman too sick to continue her pregnancy, a baby too sick to survive delivery—to justify what they deem to be a barbaric procedure. To those who share this view, I ask them to consider this: Abortion can also save lives.

Before Roe, hospital wards were filled with women dying from botched abortions. The procedure was legalized, in part, because doctors recognized a public health crisis. Even now, I’m grateful that many patients can safely self-manage with pills ordered online for a few dollars. And I worry about the women who can’t, like an incarcerated patient whom my colleague recently cared for.

Her baby was diagnosed with acrania, a rare malformation characterized by the partial or complete absence of the fetal skull. This is always lethal. Some women, by virtue of their own resources or with help from abortion funds, are able to travel to a state that doesn’t restrict abortion care—but this wasn’t an option for this patient.

I think about Samantha Casiano and her daughter, Halo, who lived for four hours before suffocating in her parents’ arms. I think about Kaitlyn Kash, who was denied an abortion after her baby was diagnosed with osteogenesis imperfecta, a lethal condition that leaves bones so fragile they can break in the womb. I think of Tierra Walker, who died of preeclampsia at 20 weeks pregnant, found lifeless in her bed by her 14-year-old son.

These cases are a direct result of legislation that forces our patients to continue perilous pregnancies. These intolerable, unimaginably cruel laws meet the threshold of a human rights crisis and will only continue to cause harm.

How many more preventable maternal deaths will there be in Texas? How many more times will we delay necessary care to satisfy political imperatives unmoored from medical evidence? How many more times in my medical training will I sit with a patient and help her write a birth plan for the dying?

Every one of those questions has the same answer: too many.

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