Ann was 15 weeks pregnant with her fourth child when the results of her prenatal genetic test came in last August. The test showed that her daughter, whom she and her husband planned to name Juliet, was missing one of two X chromosomes, a condition called Turner syndrome that can cause dwarfism, heart defects and infertility, among other complications.
Many people decide to terminate a pregnancy after this diagnosis, the genetic counselor told Ann and her husband. But the consultant had more bad news: in two days, the family would no longer have that opportunity in their home state of Texas. Law, effective September 1, 2021, allows anyone to sue those who help anyone get an abortion in Texas after six weeks of pregnancy, and the state is providing plaintiffs with a $10,000 reward if they win. The genetic counselor told Ann that she could no longer discuss abortion with her for this reason.
“At the time, I thought, ‘It doesn’t matter; we’re not giving up on this pregnancy,” said Ann, who requested that only her middle name be used for privacy reasons and potential legal implications for her healthcare providers, her husband, or herself under an obscure Texas legal framework. She considered herself an abortionist, and the diagnosis had yet to be confirmed by amniocentesis and ultrasound.
But after reading about the condition, she realized how devastating it can be. If Juliet survives the birth, which is statistically unlikely, the baby will be hospitalized frequently and may require daily hormone injections, which cost $60,000 a year. Ann and her husband began to worry about how the birth of this child would affect their three other children.
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the vast majority of abortions occur at or before 13 weeks, and people who seek abortions later than this often cite barriers to accessing care or finding medical complications. But Texas law has effectively banned virtually all abortions in the state because many women don’t even know they’re pregnant at six weeks. No prenatal tests can diagnose genetic diseases before 11 weeks.
Situations like Ann’s are going to happen all over the country soon. On June 24, the US Supreme Court upheld a Mississippi law banning abortion after 15 weeks of pregnancy and overturned the 1973 law. Rowe vs. Wade decision guaranteeing the right to abortion. at least half of the states According to the Guttmacher Institute, a research organization that supports the right to abortion, abortion is likely to be banned.
Until the court decision 10 states with gestational restrictions on abortion had exceptions for conditions fatal before or during childbirth. None of these allow exceptions for serious but non-fatal conditions. Without such exceptions, people who can neither afford to raise a child with a disability nor travel to an out-of-state clinic may find themselves in a difficult position.
For families who have just learned that their baby may not survive birth or will be in a debilitating condition, such legal issues add yet another trauma to an already traumatic decision.
Lauren Westerfield, a Houston-based prenatal genetics consultant, said Texas law prevents her from doing her job fully. She expects that for this reason, many counselors will choose not to practice in Texas or other states where abortion is currently or will soon be banned due to trigger laws put in place by the Supreme Court decision.
When patients ask about abortions, “I tell them, ‘You can’t legally terminate a pregnancy in Texas,'” she said. “I don’t have words to describe the look on their faces when they hear this.”
Many patients have no choice but to carry the pregnancy to term. Westerfield has estimated that at least 75% of her patients who have terminated pregnancies have been prevented by state law since it was passed.
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Little is known about the outcomes for people unable to terminate pregnancies with genetic abnormalities. But study of 1000 women who have been denied access to abortion clinics because their pregnancy has expired, they are much more likely to fall into poverty, and their general health is worse than those who have had abortions.
Laura Hercher, a genetics expert and ethicist at Sarah Lawrence College, worries that restrictive abortion laws will mean that genetic disorders will eventually occur almost exclusively among poor families, especially as technological advances provide better prenatal diagnosis. Wealthier people could travel to other states to have abortions or undergo in vitro procedures that weed out embryos with genetic abnormalities.
“Ultimately, this will create a situation where one section of the population will say, ‘This can’t happen to me,’” she said, “and everyone else who cannot afford such a privilege will be left with no options.
Dr. Brian Scotto, a medical geneticist at Massachusetts General Hospital and an advocate for people with Down syndrome, said a lack of education and awareness about genetic conditions is already a problem for people living with these disorders, as well as for parents deciding whether or not to continue a pregnancy. Prenatal counselors should provide expectant parents with accurate and up-to-date information about the reality of these conditions so they can make informed decisions, he said.
As prenatal testing has become more common, so has it with selective abortions linked to genetic conditions. A published review of research suggests that 67% of pregnancies diagnosed with Down syndrome end in abortion.
However, among opponents of abortion, terminating a pregnancy after such a diagnosis is seen as an act of injustice towards the weaker side. John Seagothe president of Texas Right to Life, called such situations “tragic” but added that “we must have better answers than “the only solution is to cause the death of a child.”
Seago said his organization supports Texas bill known as the Pregnancy Non-Discrimination Act, which requires genetic counselors to educate patients about antenatal palliative care services and support groups to help them carry their pregnancies. Now, he says, “the only voices” pregnant women hear in medical conversations are pro-abortion voices.
For Ann from Texas, there were no easy answers. A week after the initial test results, an amniocentesis and an ultrasound to see Juliet’s anatomy confirmed the worst: Juliet had severe heart disease, muscle problems, and other complications.
Ann began joining Turner Syndrome support groups and reading about people living with the disorder. She learned that many die of heart disease between the ages of 20 and 30. She also saw a video of a little girl with Turner Syndrome receiving a daily injection of hormones. The child screamed in pain.
It was then that Ann decided to terminate the pregnancy, fearing the pain that Juliet would experience every day. “This decision was driven by love,” she said. “It relieves them of pain by experiencing it on themselves.”
At the end of September, she made an appointment at a clinic in Colorado. Because she was 19 weeks pregnant, the procedure was complicated and expensive, and she had to stay in Colorado for a week.
She knows she was lucky to have had the opportunity to travel, which many people in her situation could not. “I was very angry because it seemed to me that your doctor and your hospital should do this,” she said.
Shortly after the results of the amniocentesis, she began to experience severe spasms. But she didn’t tell the obstetrician she was visiting, fearing the doctor might be faced with a choice: refuse her as a patient or sue her under Texas law for inciting an abortion.
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Seago said the law only applies to abortions done in Texas; Helping someone get an out-of-state abortion would not be a crime.
However, Hercher and others fear that such fear and insecurity could harm pregnant women. While the laws of Texas and most other states provide exceptions to protect maternal health, it is not clear how this will be interpreted in each state.
Ann had an abortion on September 28, a month after the initial diagnosis turned the family’s joy into a nightmare. Before Juliet was cremated, she held her daughter in her arms.
In recent months, she has joined support groups for mothers who have had medically terminated pregnancies. Besides creating a loving and understanding community, they are the only people who can fully understand her family’s situation.
“In no way does this look like a solution,” she said. “A diagnosis is a decision that has been made for you.”
Kaiser Health News is a national health policy news service. It is an editorial independent program of the Henry J. Kaiser Family Foundation and not affiliated with Kaiser Permanente.