Kendra Joseph, outside her home in San Antonio on October 22. After several complications trying to have a second child, including one pregnancy that was diagnosed with the life-threatening condition known as Edwards syndrome, Joseph speaks about her experience and how the new near-total ban on abortion is tough on women with difficult pregnancies. Photo by Pu Ying Huang for The Texas Tribune
Oct. 29 (UPI) -- At her sonogram appointment in late September, Kendra Joseph received ominous news. Signs pointed to an impending miscarriage, but she wasn't far enough along for the doctor to know for sure. He told her to come back in a week.
The 39-year-old San Antonio mom of one began to worry. Under Senate Bill 8, Texas' new abortion law, even if the medical and developmental condition were still grim, if they could hear cardiac activity, she would have to wait out the pregnancy or leave the state to end it.
For nearly three years, Joseph and her husband, Eric, had been trying to have a second child, and laws intended to limit abortion access had, ironically, made the process more difficult. With SB 8 in effect, given the risks her pregnancies entail, Joseph is hesitant to keep trying at all -- one of the many unforeseen consequences of the new law.
The reality of her pregnancies so far has not been as black-and-white as the language in the bill, crafted by a childless, single man: state Sen. Bryan Hughes, R-Mineola.
On March 15, when Hughes discussed his bill to bar abortion after a patient is about six weeks into a pregnancy, he focused solely on what he called the heartbeat.
"That heartbeat is a key medical indicator of whether that unborn child is going to reach live birth," Hughes said during a meeting of the Senate State Affairs Committee, of which he is chair.
Medical and legal experts say it is misleading to use "heartbeat" to refer to the cardiac activity of embryos at a developmental stage when they don't possess a heart.
But for hundreds of thousands of pregnant Texans, especially those who face tough or unusual pregnancies, that cardiac activity is the starting point. Chromosomal conditions, malformed vital organs and other severe fetal abnormalities can develop along the way. When a doctor tells an expectant parent their child's condition is "incompatible with life" or "lethal," they find themselves in a world of gray.
Matter of viability
When Joseph's first child was born five years ago -- a daughter conceived and delivered with the kind of predictability Joseph took for granted - she left her job as a middle school theater and debate teacher and started working as a real estate agent. She hoped to spend more time with her daughter, Adalynn, and the sibling or siblings she assumed would follow.
Having been advised it might take longer to get pregnant as she was reaching what doctors consider "advanced maternal age," the couple soon began to try for a second child. The average age for giving birth has increased in Texas, from 26.1 years old in 2009 to 28.3 years old in 2018, and is higher in the metro areas.
In 2018, Joseph had her first miscarriage. It stunned her, in a way, how unprepared she was. "We don't talk about pregnancy loss [in our culture]," she said.
When she got pregnant again in March 2019, Joseph was 36, officially a high-risk pregnancy.
A pregnancy is considered to be at increased risk if the pregnant person is over 35. Certain conditions, like gestational diabetes and preeclampsia, are more likely during pregnancy in older women, as is miscarriage. Doctors often recommend additional screening and monitoring.
Genetic disorders are also more likely. And Joseph's Ashkenazi Jewish heritage also elevated the risk of certain genetic conditions like Tay-Sachs and Canavan disease, so she already planned on prenatal screening.
Most genetic screening takes place at the end of the first trimester, well after cardiac activity is detected. Although it is optional, genetic screening, like ultrasounds and sonograms, is a common part of prenatal care.
Genetic screening tools offer valuable information, said Lorie Harper, division chief of maternal-fetal medicine at Dell Medical School at the University of Texas at Austin.
But under SB 8, what families can do with that information is limited. Before the new law, some families went into genetic screening knowing if certain conditions were detected, they would terminate. "We're not going to detect them before six weeks, because there's not a lot to detect on ultrasound," Harper said.
Plenty of families who would not consider abortion want genetic screening anyway, so they can be prepared for challenges, and Harper is not sure if more families will decline genetic screening now that termination isn't an option.
When Joseph arrived at her genetic screening appointment in 2019, she wasn't expecting to hear anything that would lead her to terminate the pregnancy. But when the results came in around her 15th week of pregnancy, her doctor delivered devastating news: The baby had trisomy 18, also known as Edwards syndrome, which is, in most cases, fatal before the baby's first birthday.
"We looked it up and we realized how terrible it really was," Joseph said. It's difficult to find consistent information on the chance of a baby with the condition being born alive because so many women decide to terminate their pregnancies once they are told their baby has trisomy 18. Of those babies born with the chromosomal abnormality, the median lifespan is 10-14 days, and only 12% percent survive until age 5. Many of the symptoms of the condition are painful.
Advocates argue that more could be done to improve the odds of survival in babies with severe genetic disorders like trisomy 18, and claim that labeling the condition "incompatible with life" is a self-fulfilling prophecy. But for the time being, the condition is considered imminently fatal.
One of the reasons SB 8 used the objective presence of cardiac activity was to avoid the issue of "viability," said Texas Right to Life legislative director John Seago.
"Viability has actually been an ambiguous concept that policymakers around the country are getting away from," Seago said. "That is a judgment call from the physician." While doctors might feel they are the right ones to make that judgment call, he said, "you can't punt to medical judgment when at the core it is an ethical issue."
Not every case of trisomy 18 is equally severe, but at 15 weeks, some of the more severe and painful effects of the condition were showing in Joseph's baby -- swelling was visible on the sonogram. It was a boy, which made his chances of survival even slimmer.
Joseph and her husband couldn't take a wait-and-see approach. In 2019, Texas prohibited abortion after 20 weeks, and the law was unclear whether trisomy 18 would count as an exception due to "severe fetal abnormality" under the state's 2013 restrictions.
They were watching the clock in another way as well: Joseph said they wanted to make the decision before her baby could feel pain -- whether from the abortion or from his medical condition. Doctors disagree on when the ability to experience pain develops, but Joseph's doctor assured her that at 15 weeks, it had not.
When she decided to end the pregnancy, Joseph's doctors referred her to an abortion clinic. Insurance wouldn't cover the procedure and doing it in the hospital was, for the Josephs, like most people, prohibitively expensive.
"That was my first time entering an abortion clinic," she said.
'Already a hard situation'
Joseph had always believed that carrying a pregnancy to term should be a woman's choice, as was abortion, but she didn't necessarily feel like she was exercising her rights. She felt like she was in a medical emergency, trying to make the right decision for her entire family.
"It was extremely emotional. We wanted this baby so bad. We really did. My ultimate decision was because I didn't want him suffering," Joseph said. They decided to name the baby and called him Arlo.
Because of Texas' 2003 "Women's Right To Know Act," a law authored by then-state Rep. Frank Corte Jr., R-San Antonio, Joseph had to visit the clinic twice. On the first day, she sat with a room full of other women, listening to information about the procedure.
Under Corte's legislation, any pregnant person in Texas must wait 24 hours before going back to the clinic to have an abortion. So the next day, Joseph went back and, after sitting for hours in a packed waiting room, had the abortion.
Texas had just 22 abortion clinics at that point in 2019, and those facilities provided about half of the more than 56,000 medically induced abortions performed on Texas residents that year. The other half were performed at ambulatory surgery centers, and about 1% were in hospitals or outside the state. In the nearly two months since SB 8 went into effect, news reports show this demand is shifting entirely to out-of-state providers who are struggling to meet it.
Although she was heartbroken over losing the baby, Joseph was also keenly aware of how much she benefited from resources like therapy, insurance and a partner able to drive her to appointments -- things not everyone has. She was thankful that Eric could handle the flood of paperwork and even more thankful they were both employed and could afford the $1,000 procedure.
Over the next two years, she would lose some of those resources herself, and her dreams for a second child would seem more and more unlikely. Time was not on Joseph's side. Her hormone levels indicate her egg reserves, which decrease over time, are already lower than average.
Last year, the couple met with a doctor to begin in vitro fertilization. The first round didn't produce enough eggs, so they started again in May, as the Legislature was passing SB 8. Joseph was watching the bill closely, wondering what it would mean for their work with the fertility specialist.
For families looking to increase their chances of getting pregnant quickly with IVF, some opt to try with two or more embryos transferred into the uterus at once. Whether to recommend multiple-embryo transfer is a complex issue in the IVF community. If more than one embryo implants -- resulting in a multiple pregnancy -- the associated risk increases.
Now, doctors advising these families have to work within the limits of SB 8, said Elizabeth Sepper, who teaches health law at the University of Texas at Austin School of Law.
"Often the implantation of multiple embryos means selective reduction toward the end of the first trimester to help increase the odds of a successful pregnancy," said Sepper. "These procedures can't be done consistent with SB 8."
The effects of an anti-abortion bill on fertility treatments is always an area of concern, said Seago, but seeking an abortion after a fertility treatment is the same as any other abortion: the taking of a human life.
As the Josephs watched SB 8 signed into law on May 19, they were scheduled for egg retrieval the next week. Then Eric lost his job at Caterpillar and, with that, their insurance. They discontinued IVF, and Joseph started having more serious doubts.
When she thinks about the new barriers created by SB 8 -- what it would have been like waiting for Arlo to die -- she wonders if it's worth the risk to try again.
"It just makes what was already a hard situation impossible," Joseph said.
She's not alone in her hesitation. Austin OB-GYN Rachel Breedlove said she's seeing patients consider or ask for more reliable forms of birth control -- like IUDs -- now that abortion is not an option. "It's on people's minds," Breedlove said.
Exceptions in the law provide little reassurance, she said. What patients and their doctors consider an "emergency" situation might still open them up to litigation under SB 8. The law uses "emergency" with little clarification, similar to the exception for "severe fetal abnormalities" in the 2013 law -- those terms are not absolute in the medical field.
"The language doesn't protect doctors," Breedlove said. "It protects the people suing them."
Fear of being sued for "aiding and abetting" an abortion could lead to more hesitancy around offering what is ultimately appropriate medical care, said Harper, who is also an associate professor in the women's health department at Dell Medical School. "Termination is sometimes appropriate medical care for women."
Some people know that they cannot safely take a pregnancy to term because of pre-existing medical conditions, but they may also not have reliable birth control or their birth control can fail. All they can do now, if they cannot leave Texas, is let the situation play out until it becomes an unquestionable emergency -- by which time the risk to their health is even greater.
Even if a situation would ultimately qualify as an emergency, or the procedure would be legal, such as in an ectopic pregnancy, Harper worries that doctors will be too fearful to recommend it when they otherwise would, or the need to involve lawyers will result in delayed care.
Then when all agree the procedure is both legal and necessary, finding someone to perform it will be a whole different barrier, Harper said. As hospitals consider their liability, Harper worries fewer will offer termination-focused medical procedures and surgeries, and with ambulatory clinics closing, women won't have access to what few abortions are still legal. Those who can will go across state lines, but not everyone can.
When Joseph found out she was pregnant a fourth time in September, her excitement was mixed with apprehension, and it only got worse when the first ultrasound showed signs of trouble.
A week later, when she went back to her doctor, the situation was clear: There was no cardiac activity. She was able to take misoprostol, a drug that speeds up the miscarriage process, which can take weeks.
As she continues to see her therapist and sort out the disappointment and grief of the past four years, Joseph has shared her story with family and friends, including those who are ardently against abortion. The feedback has been encouraging, she said. People, she said, have been willing to see the "gray areas" of abortion -- situations already fraught with trauma and sadness -- overlooked in the language of laws.
"It's given me a very different view," Joseph said. "I see pregnancy, I see loss, I see the decision to not follow through. ... It's very private. I don't think anyone comes through it lightly."
Disclosure: The University of Texas at Austin has been a financial supporter of The Texas Tribune, a nonprofit, nonpartisan news organization that is funded in part by donations from members, foundations and corporate sponsors. Financial supporters play no role in the Tribune's journalism. Find a complete list of them here.
This article originally appeared in The Texas Tribune at https://www.texastribune.org/2021/10/29/texas-abortion-law-complications/.
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