Ann was 15 weeks pregnant with her fourth child when the results of her prenatal genetic test appeared last August. The test showed that her daughter, whom her husband intended to name Juliet, was missing one of her two X chromosomes, called Turner Syndrome, which can cause dwarfism, heart defects and infertility, among other complications.

Many people decide to terminate their pregnancy after this diagnosis, said genetic counselor Ani և to her husband. But the consultant had more bad news. In two days, the family would no longer have that option in their home state of Texas. Law:, effective September 1, 2021, allows anyone to sue anyone who helps anyone get an abortion in Texas after six weeks’ gestation; the state provides $ 10,000 in rewards to plaintiffs if they win. Genie, a genetic counselor, said she could no longer discuss termination with her because of this.

“At the time, I thought, ‘No, we’re not giving up on this pregnancy,'” said Anne, who asked to use only her second name because of her secrecy and her possible medical implications. suppliers, her spouse, or herself under an indefinite Texas legal framework. He considered himself a supporter of life; the diagnosis had yet to be confirmed by amniocentesis: ultrasound.

But after reading about the situation, he realized how devastating it can be. If Juliet had survived childbirth, which was statistically unlikely, the baby would have been hospitalized more often, and she might need daily hormone injections at a cost of $ 60,000 a year. Anne and her husband began to worry about how having this child could affect their other three children.

It: The vast majority of abortions occur within 13 weeks or earlier, and people who seek abortions later often report barriers to accessing care or finding medical complications. But Texas law has virtually banned almost all abortions in the state, as many women do not even know they are six weeks pregnant. No prenatal test can diagnose genetic conditions until 11 weeks.

Situations like Annie’s will soon be happening all over the country. The US Supreme Court on June 24 upheld the Mississippi Charter, which prohibits abortion 15 weeks later and overturned 1973. Ron vs. Wade a decision guaranteeing the right to abortion. At least half of the United States According to the Guttmacher Institute, a research organization that advocates for abortion rights, it is likely to ban abortion.

Until the court decision, only 10 states: With abortion restrictions, there have been exceptions to prenatal or postnatal terminal illnesses. No one makes exceptions for serious but not fatal conditions. Without such exceptions, people who can not afford to raise a child with a disability or go to an out-of-state clinic may find themselves in a difficult position.

For families who have just learned that their baby can not survive the birth or will have a debilitating condition, such legal issues add to the already traumatic decision.

Lauren Westerfield, a prenatal genetic counselor in Houston, says Texas law has made it impossible for her to do all of her work. She expects that because of this, many counselors will choose not to practice in Texas or other states where abortion is now illegal, or will soon be, because of the Supreme Court ruling.

When patients ask about termination, “I tell them. “You do not legally have that opportunity in Texas,” he said. “I have no words to describe the look that appears on their faces when they hear it.”

Many patients have no choice but to end the pregnancy. Westerfield estimates that at least 75 percent of her patients who would terminate their pregnancies were prevented from doing so by state law.

Little is known about the results of people who are unable to terminate their pregnancies with genetic abnormalities. But a A study of 1,000 women Those who dropped out of abortion clinics because they were past the pregnancy period were found to be much more likely to fall into poverty, with overall health worse than those who had an abortion.

Laura HercherSarah Lawrence College, a geneticist who specializes in genetics, worries that laws restricting abortion will mean that genetic disorders will eventually occur in almost exclusively poor families, especially as technological advances provide better prenatal diagnoses. Wealthier people may travel to other states for abortions or undergo in vitro procedures to examine embryos with genetic abnormalities.

“Eventually, it will create a situation when a part of the population will say. “This can not happen to me,” he said.

Dr. Brian ScottoThe Massachusetts’s orthopedic surgeon at the Massachusetts General Hospital says a lack of education about genetic conditions is already a problem for people with the disorder, as well as for parents who choose to continue the pregnancy. Prenatal counselors, she said, need to provide future parents with accurate, up-to-date information about the reality of these conditions so that they can make informed decisions.

As prenatal testing has become more common, so have selective abortions due to genetic conditions. A published review of the study suggests that: 67% of pregnancies The diagnosis of Down syndrome ends in abortion.

Opponents of abortion, however, view abortion after such a diagnosis as an act of injustice to the weaker side. John SigoThe Texas President of the 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. “

Sigo said his organization supports a Texas bill Known as the Preborn Non-Discrimination Act, which requires genetic counselors to inform patients about prenatal palliative care և support groups to help them terminate their pregnancies. According to him, right now, the “only voices” that pregnant women hear in medical conversations are in favor of abortion.

There were no simple answers for Annie in Texas. One week after the initial test results, amniocentesis and ultrasound to see Juliet’s anatomy confirmed the worst. Juliet had severe heart disease, muscle problems and other complications.

Anne began joining Terner Syndrome support groups to read about people living with the disorder. He learned that many people die of heart disease between the ages of 20 and 30. He also saw a video of a little girl with Turner syndrome receiving her daily hormone injection. The child was screaming in pain.

It was then that Anne decided to terminate her pregnancy, fearing the pain that Juliet would feel every day. “This decision is motivated by love,” he said. “It takes the pain away from them, feeling it for yourself.”

At the end of September, he made an appointment at a clinic in Colorado. Since she is 19 weeks pregnant, this procedure will be difficult and expensive, she will have to stay in Colorado for a week.

He knows he was lucky enough to be able to travel, which many in his situation could not do. “I was really angry because I felt this was something that your doctor և your hospital needs to do,” he said.

Immediately after the results of amniocentesis, she began to experience severe convulsions. But she did not tell the midwife she was attending about, worrying that the practice would stop her from leaving her as a patient or suing for abortion under Texas law.

Sigo said the law only applies to abortions in Texas. It would not be a crime to help someone have an abortion outside the country.

However, Hercher և and others worry that such fear and uncertainty could harm pregnant women. While the laws of Texas and many other states provide exceptions to protect maternal health, it is unclear how this will be interpreted in each state.

Ann had her abortion on September 28. A month after the initial diagnosis, the family’s joy turned into a nightmare. Before embracing Juliet, he hugged his daughter.

In recent months, she has joined support groups for mothers who have terminated their pregnancies for medical reasons. In addition to providing a loving and understanding community, they are the only people who can fully understand the state of their family.

“At no point does it seem like a decision,” he said. “The diagnosis is a decision made for you.”


ԽՆ: (Kaiser Health News) is a national newsroom that provides in-depth journalism on health issues. Along with policy analysis and surveys, KHN is one of the three main operating programs KFF: (Kaiser Family Foundation): KFF is a non-profit organization that provides information to the nation on health issues. Subscribe: KHN free morning briefing.

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