Ann was 15 weeks pregnant with her fourth child when the results of her prenatal genetic tests came back last August. The experiment suggested that her daughter, whose name she and her husband Juliet planned to keep, was missing one of her two X chromosomes – a condition called Turner syndrome that could cause dwarfism, heart defects and infertility, among other complications.
Many people decide to stop their pregnancy after being diagnosed with the disease, a genetic counselor told Ann and her husband. But the counselor had even worse news: within two days, the family would no longer have that option in their home state of Texas. A law, effective Sept. 1, 2021, would allow anyone to sue anyone who assisted in aborting a six-week abortion in Texas – and the state offered a পুরস্কার 10,000 reward for plaintiffs if they won. The genetic counselor told Ann that she could no longer discuss termination with him for this reason.
“At that time I thought, ‘It doesn’t matter; We’re not giving up on this pregnancy, ”said Ann, who, under the vague legal framework of Texas, asked to use only her middle name out of concern for privacy and possible legal repercussions for her medical provider, her husband or herself. He considered himself pro-life, and the diagnosis still needs to be confirmed through amniocentesis and ultrasound.
But after reading about the situation, he realized how devastating it could be. If Juliet survived the birth, which was statistically unlikely, the baby would be admitted to the hospital frequently and would need hormone shots every day, which would cost $ 60,000 per year. Ann and her husband began to think about how this child would affect their other three children.
Most miscarriages occur before or after 13 weeks, and people who want to have an abortion after that often refer to barriers to accessing care or discovering treatment-related complications. But Texas law effectively prohibits virtually all abortions in the state because many women don’t even know they are six weeks pregnant. No prenatal test can diagnose a genetic condition before 11 weeks.
Situations like Ann’s will soon happen across the country. U.S. Supreme Court upholds Mississippi law June 24, which prohibits abortion after 15 weeks and repeals 1973 Rowe vs. Wade Decisions that guarantee the right to abortion. At least half of the states are likely to ban abortion, according to the Guttmacher Institute, a research organization that supports the right to abortion.
Prior to the court ruling, only 10 states, including the gestational limit on abortion, had exemptions for preterm or at-birth fatal conditions. No one gives a discount for serious but non-lethal conditions. Without such exemptions, those who cannot raise a disabled child or travel to an out-of-state clinic can be left in a difficult place.
Families who have just learned that their child may not have been born or may face a debilitating condition, such legal issues already add another trauma to a traumatic decision.
Lauren Westerfield, a prenatal genetic counselor in Houston, says Texas law has made it impossible for her to do her job completely. He hopes that, for that reason, many counselors will choose not to practice in Texas or other states where abortion is now illegal – or will soon be – due to the trigger law introduced by a Supreme Court decision.
When patients ask about termination, “I tell them, ‘Legally, in Texas, you don’t have that option,'” he said. “I don’t have the words to describe the look on their faces when they hear it.”
Many patients have no choice but to carry the pregnancy for a period. Westerfield estimates that at least 75% of his patients who stopped their pregnancies have been prevented since it was passed by state law.
Very little is known about the consequences for people unable to terminate pregnancy, including genetic anomalies. But a study that tracked 1,000 women who moved away from abortion clinics because they exceeded the gestational age limit made them more likely to fall into poverty and their overall health was worse than those who had abortions.
Sarah Lawrence College genetics expert and ethicist Laura Hercher expressed concern that the limited abortion law would mean that genetic disorders would eventually occur almost exclusively in poor families, especially as technological advances provide better antenatal diagnoses. Wealthy people can travel to other states for abortion – or go through in vitro screening of fetuses with genetic incompatibility.
“Ultimately, it will create a situation where a section of the population says, ‘This can’t happen to me,'” he said – and everyone else who can’t afford this privilege will be stuck without a choice.
Dr. Brian Scottco, a medical geneticist at Massachusetts General Hospital and a lawyer for people with Down syndrome, said the lack of education and awareness of the genetic condition is a problem for people already living with the disease, as well as for parents to choose. . Prenatal counselors, he said, should provide prospective parents with accurate, up-to-date information about the reality of that condition so they can make informed decisions.
As prenatal testing has become more common, there are also selective terminations of pregnancies associated with genetic conditions. A published review of the study suggests that 67% of pregnancies with the diagnosis of Down syndrome end in miscarriage.
Among abortion opponents, however, terminating pregnancy after such a diagnosis is seen as an injustice against a vulnerable party. John Sego, president of Texas Right to Life, called the situation “tragic” but added that “we have to have a better answer than ‘the only solution to the child’s death.'”
Sego says his organization supports a bill in Texas known as the Preborne Non-Discrimination Act, which would require genetic counselors to inform patients about antenatal palliative care services and support groups to carry during pregnancy. At the moment, she said, the “only voice” that pregnant people hear in medical conversations is in favor of abortion.
For Anne of Texas, there was no easy answer. One week after the results of the initial test, an amniocentesis and an ultrasound to see Juliet’s anatomy confirmed the worst: Juliet had a serious heart disease, muscle problems and other complications.
Ann Turner began joining the Syndrome Support Group and began reading about people with the disorder. Many, he learned, died of heart disease in their 20s and 30s. He also watched a video of a young girl with Turner syndrome taking daily hormone injections. The child was screaming in pain.
It was at this point that Anne decided to end her pregnancy, fearing that Juliet would experience the same pain every day. “This decision is out of love,” he said. “It feels like it’s taking the pain away from them.”
He made an appointment at a clinic in Colorado in late September. Since the pregnancy was 19 weeks, the procedure would be complicated and expensive, she would have to stay in Colorado for a week.
He knows he was lucky to have the option to travel, which many people in his situation could not do. “I was really angry because I felt it was something that your doctor and your hospital should do,” he said.
Immediately after the amniocentesis result, he began to feel severe cramping. But she did not tell the obstetrician she was seeing, worried that the practice would exclude her as a patient or sue her under Texas law for abortion.
Sego said the law only applies to abortions performed in Texas; It would not be a crime to help someone outside the state to have an abortion.
Nevertheless, Harcher and others are concerned that this kind of fear and uncertainty may harm pregnant women. Although laws in Texas and most other states provide exemptions to protect maternal health, it is not clear how this will be interpreted in each state.
Ann had her abortion on September 28 – a month after the initial diagnosis turned the family’s joy into a nightmare. Before burning Juliet, he grabbed his daughter.
In recent months, she has joined support groups for mothers who have had their pregnancies discontinued due to treatment. In addition to providing a loving and understanding community, they are the only person who fully understands his or her family situation.
“At no time does it seem like a decision,” he said. “Diagnosis is a decision that has been made for you.”
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