Outcomes from expectant management vary greatly depending on when the waters break. Later in pregnancy, doctors can try to delay delivery to give the fetus more time to develop while warding off infection or other maternal complications such as hemorrhage.
But when membranes rupture earlier in pregnancy, particularly before 24 weeks, the chance of a fetus surviving plummets. One reason is that amniotic fluid plays a key role in fetal lung development. For a fetus at 18 weeks, the chance of survival in that state is almost nonexistent, according to Peaceman: “This is probably about as close to zero as you’ll ever get in medicine.”
Fetuses that do survive a premature delivery can die soon after birth. If they survive, they may experience major problems with their lungs or strokes, become blind, or develop cerebral palsy or other disabilities and illnesses.
For the women, expectant management after premature rupture of membranes comes with its own health risks. One study showed they were four times as likely to develop an infection and 2.4 times as likely to experience a postpartum hemorrhage, compared with women who terminated the pregnancy.
In some cases, the infection can become severe or life-threatening, leading to sepsis, a hysterectomy, or even death. In 2012, a woman died in Ireland after her waters broke at 17 weeks and doctors refused to give her an abortion. The case spurred a movement that led to the overturning of Ireland’s abortion ban in 2018.
A clinical battle begins behind the scenes
Although distraught and heartbroken at this news, Elizabeth forced herself to think it through.
After she talked with James, they agreed they should end the pregnancy. The risks to Elizabeth’s health were simply too high.
To Elizabeth, termination also felt like the most merciful option for her fetus. Even with the slim chance of survival to 24 weeks, the newborn would face intense physical challenges and aggressive medical interventions.
“You have to ask yourself, would I put any living thing through the pain, and the horrors, of having to try to fight for their life the minute that they’re born?”
The next day, Elizabeth’s OB-GYN went to the hospital to arrange for the procedure. Right away, she ran into obstacles because of the Texas law. A fight began, which Elizabeth first became aware of as her doctor paced the hall outside her room, talking on her phone.
“I remember hearing her, from my room, speaking loudly about how nothing is being done here.”
After one conversation, the doctor returned to her bedside.
“I can tell that she’s been beat down, because she has been trying to fight for me all day, advocating on my behalf,” Elizabeth said. “And she starts to cry, and she tells me: ‘They’re not going to touch you.’ And that ‘you can either stay here and wait to get sick where we can monitor you, or we discharge you and you monitor yourself. Or you wait till your baby’s heartbeat stops.’”
It was because of the state law that forbids termination of a pregnancy as long as there is fetal cardiac activity. The law, which remains in effect, does contain one exception — for a “medical emergency.” But the statute doesn’t define that term. No one really knows what the legislature meant by that, and doctors are afraid of overstepping.
A wait for fetal death or her own encroaching illness
To Elizabeth, it seemed obvious that things were deteriorating. She had cramps and was passing clots of blood. Her discharge was yellow and smelled weird. But hospital staffers told her those weren’t the right symptoms yet. The signs of a severe infection in her uterus would include a fever of 100.4 degrees and chills. Her discharge had to be darker. And it had to smell foul, really bad. Enough to make her retch.
Houston Methodist declined to comment on the specifics of Elizabeth’s care, except to say that it follows all state laws and that a medical ethics committee sometimes reviews complex cases.
To Peaceman at Northwestern, it sounded like the hospital’s clinicians were using the most common clinical signs of chorioamnionitis as a guideline. If Elizabeth exhibited enough of them, he said, then they could document the encroaching infection and therefore terminate the pregnancy under the law’s “medical emergency” clause.
Elizabeth found this maddening.
“At first, I was really enraged at the hospital and administration,” she said. “To them, my life was not in danger enough.”
The conundrum became painfully, distressingly clear: Wait to get sicker, or wait until the fetal heartbeat ceased. Either way, she saw nothing ahead but fear and grief — prolonged, delayed, amplified.
“That’s torture to have to carry a pregnancy which has such a low chance of survival,” said Peaceman. “Most women would find it extremely difficult and emotionally very challenging. And that’s a big part of this problem, when we as physicians are trying to relieve patients’ suffering. They’re not allowed to do that in Texas.”
Later on, Elizabeth said, she realized that her anger at Methodist was misplaced. “It wasn’t that the Methodist hospital was refusing to perform a service to me simply because they didn’t want to, it was because Texas law … put them in a position to where they were intimidated to not perform this procedure.”
Under Texas law, doctors can be sued by almost anyone for performing an abortion.
An agonizing wait at home
Elizabeth chose to go home rather than wait to get sick at the hospital.
But she was barely out the door, still in the parking lot, when her phone rang. It was someone else at Methodist, perhaps a clerk, calling to go over some paperwork.
“It’s this woman who was saying, ‘Hi Miss Weller, you’re at the 19-week mark. We usually have our moms register for delivery at this point. So I’m here to call you to register for your delivery on Oct. 5, so I can collect all your insurance information. How are you doing, and are you excited for the delivery?’”
Elizabeth knew it was just a terrible coincidence, an awful bureaucratic oversight, and yet it drove home to her how powerless she was, how alone, in that vast medical system of rules, legal regulations and revenue.
“I just cried and screamed in the parking lot,” she recounted. “This poor woman had no idea what she was telling me. And I told her, ‘No, ma’am. I’m actually headed home right now because I have to await my dead baby’s delivery.’ And she goes, ‘I’m so sorry, I’m so sorry, I didn’t know.’”
For Elizabeth, that tragic conversation was just “the beginning of the hell that was going to ensue” for the rest of the week.
The next day, a Thursday, she started throwing up. But when she called, they told her nausea and vomiting weren’t among the symptoms they were looking for.
On Friday, when she woke up, she was still passing blood and discharge, still feeling sick, and feeling strange things in her uterus. She felt lost and confused. “I was just laying in bed, you know, wondering: Am I pregnant, or am I not pregnant? And it’s this stupid, like, distinction that you’re just making in this grief. You’re trying to understand exactly what’s going on. Because at this point, I’m in survival mode. I’m trying to understand. I’m trying to mentally survive this.”
How the law led to medical trauma
Elizabeth’s experience amounts to a kind of medical trauma, which is layered on top of the grief of pregnancy loss, said Elaine Cavazos, a psychotherapist specializing in the perinatal period and the chief clinical officer of Reproductive Psychiatry and Counseling in Austin, Texas.
“It’s just really unimaginable to be in a position of having to think: How close to death am I before somebody is going to take action and help me?”
Losing a pregnancy is a particular kind of loss, one that tends to make other people — even health professionals — uncomfortable. All too often, Cavazos said, patients are told to get over it, move on, try again. These dismissals only increase the sense of isolation, stigma, and shame.
And now the Texas abortion law has created an additional bind, Cavazos said.
In a sudden obstetric emergency, a termination might be the least risky option, clinically. But now, Cavazos said, “your medical provider says that it’s illegal and they can’t provide it — and not only can they not provide it, but they can’t talk to you about it.”
“It might even be scary for you to reach out and seek support — even mental health support,” she added. “Because the state has made it very clear that if you talk about this, you’re vulnerable to being sued.”
An unseen panel weighs the case
As Friday dragged on, Elizabeth started wondering if the heartbeat had stopped. She called her doctor and begged to get in. At the office, her OB-GYN turned down the ultrasound volume so they wouldn’t have to hear.
“I said, ‘Well, is there a heartbeat still?’ And she says, ‘Yes. And it’s strong.’”
“It was devastating to hear that,” Elizabeth said. “Not because I wanted my baby to die, but because I needed this hell to end. And I knew my baby was suffering, I knew I was suffering, I knew my husband was suffering.”
Her doctor said she had been calling other hospitals, but none of them would help. She said Houston Methodist had convened an ethics panel of doctors, but her doctor didn’t seem very optimistic.
Right there in the office, James pulled out his cellphone and started looking for flights to states with less restrictive abortion laws. Maybe they could get the abortion in Denver or Albuquerque?
“He and I kept telling each other, ‘What is the whole point of the Hippocratic oath to do no harm?’” Elizabeth said. “And yet we’re being pulled through this.”
Back at home, the Wellers got more serious about their travel plans and started booking tickets.
Then Elizabeth felt another sudden, forceful gush of fluid leave her body. The color was darker, and the odor was foul. Enough to make her retch.
When they called the doctor’s office back, they were told to go straight to the emergency room. And quickly. They now had some of the symptoms they needed to show the infection was getting worse.
Before they drove off, Elizabeth paused to do something. She took a swipe of the new discharge and placed the toilet paper in a Ziploc bag to carry with her.
It was like an evidence bag. She was through with being dismissed, being told to wait. There was an infection, and she did need treatment. She had the proof.
“Because I didn’t want anybody to tell me they did not believe me,” she said. “And if they didn’t believe me, I was going to show it to them and say, “Look! You open it. You smell it yourself. You’re not going to tell me that what I’m experiencing isn’t real again.’”
She never had to use that bag. Because once they got back to the hospital, while they were checking in at the emergency room, her doctor called.
The ethics panel had reached a decision, the doctor told them. Unnamed, unknown doctors somewhere had come to an agreement that Elizabeth could be induced to terminate the pregnancy that night.
As Elizabeth recalled hearing, one particular doctor had argued her case: “They found a doctor from East Texas who spoke up and was so patient-forward, so patient-advocating, that he said, ‘This is ridiculous.’”
James and Elizabeth cried out their thanks to the doctor. They stood up in the middle of the ER and embraced.
“We shouldn’t have been celebrating,” Elizabeth said. “And yet we were. Because the alternative was hell.”
A mournful birth
Elizabeth was induced late Friday night, and the labor became painful enough that she had to get an epidural. Midnight came and went in a blur. On Saturday, May 14, at about 2 a.m., she gave birth. Their daughter, as expected, was stillborn.
“Later, they laid down this beautiful baby girl in my arms. She was so tiny. And she rested on my chest. … I looked at her little hands, and I just cried. And I told her, ‘I’m so sorry I couldn’t give you life. I’m so sorry.”
When Roe v. Wade fell in June, Elizabeth’s pain and anger surged again.
“You know they paint this woman into being this individual that doesn’t care about her life, doesn’t care about the life of the children she creates or whatever, and she just recklessly and negligently goes out and gets abortions all willy-nilly, left and right,” she said. “Abortions are sometimes needed out of an act of an emergency, out of an act of saving a woman’s life. Or hell — it honestly shouldn’t even get to the point where you’re having to save a woman’s life.”
The Wellers do want to try again, but first they need to get to a “mentally healthier place,” Elizabeth said. “It’s not just the fear that it could happen again, but also the added fear of, ‘What if it happens again and I can’t get help?’
“Let’s say I do have to go through this situation again,” she said. “And how can I be so sure I’m not going to get too sick to the point where that’s it … now you can’t have kids. It is a horrible gamble that we are making Texas women go through.”
Elizabeth has been sharing her story and has found that whatever the political affiliation of the listener, they all agree her experience was horrible.
Now she wants those sentiments translated into action: “We live in a culture that advocates small government, and yet we are allowing states, we are allowing our Texas state government, to dictate what women do with their own bodies and to dictate what they think is best, what medical procedures they think is best for them to get.”
In the medical profession, doctors will continue to grapple with the new legal restrictions and the resultant dilemmas in obstetric care, said Peaceman.
“It’s going to take a while before … the medical community comes to some kind of consensus on where you draw this line and where you say enough is enough.
“Because that doesn’t really exist right now,” he added. “And if you leave it up to individuals, you’re going to get uncertainty and people unwilling to make decisions.”
(KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation. This story is part of a partnership that includes NPR and KHN.)©2022 Kaiser Health News. Visit khn.org. Distributed by Tribune Content Agency, LLC.