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

Many people decide to terminate their pregnancies after this diagnosis, said Anne’s genetic counselor and her husband. But the counselor 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 have an abortion in Texas after six weeks of pregnancy – and the state provides a $ 10,000 reward to plaintiffs if they win. The genetic counselor told Anne that he could no longer discuss termination with her for that reason.

At the time, I thought, “It doesn’t matter; we will not give up this pregnancy, “said Anne, who asked for only her middle name to be used because of concerns about her privacy and potential legal consequences for her health care providers, her husband or herself under a vague Texas legal framework. It was considered pro-life and the diagnosis still had to be confirmed by amniocentesis and ultrasound.

But after reading about the condition, she realized how devastating it could be. If Juliet survives the birth, which is statistically unlikely, the child will be hospitalized frequently and may need daily hormone injections costing $ 60,000 a year. Anne and her husband began to worry about how the birth of this child would affect their other three children.

IN most abortions occur on or before 13 weeksand people who seek an abortion later than that often point to barriers to accessing care or finding a medical complication. But Texas law effectively bans almost all abortions in the state because many women don’t even know they’re six weeks pregnant. No prenatal tests can diagnose genetic conditions before 11 weeks.

Situations like Anne’s will soon happen across the country. On June 24, the U.S. Supreme Court upheld the Mississippi Bylaws, which banned abortions after 15 weeks, and repealed the 1973 law. Rowe vs. Wade a decision guaranteeing the right to abortion. At least half of the states they are likely to ban abortions, according to the Guttmacher Institute, a research organization that supports abortion rights.

Only before the court decision 10 states with gestational restrictions on abortion had exceptions for conditions fatal before or at birth. No one allows 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 a clinic outside the country could be left in a difficult situation.

For families who have just learned that their child may not survive the birth or will have a disabling condition, such legal problems add another trauma to an already traumatic decision.

Lauren Westerfield, a prenatal genetic consultant in Houston, said Texas law has made it impossible for her to do her job completely. She expects that for this reason, many counselors will choose not to practice in Texas or other states where abortion is now illegal – or will soon be – due to trigger laws introduced by the Supreme Court.

When patients ask for termination, “I tell them, ‘By law in Texas, you don’t have that option,'” she said. “I have no words to describe the look on their faces when they hear this.”

Many patients have no choice but to bring the pregnancy to term. Westerfield estimates that at least 75% of her patients who would terminate their pregnancies were prevented by state law after its enactment.

Little is known about the results in people who cannot terminate a pregnancy with genetic abnormalities. But a study that tracked 1,000 women who have been rejected by abortion clinics because they have crossed gestational boundaries have found that they are much more likely to fall into poverty and have poorer overall health than those who have had an abortion.

Laura HercherSarah Lawrence, a geneticist and ethics specialist at the 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 diagnoses. . Wealthier people could travel to other states for abortions – or undergo in vitro procedures that hide embryos with genetic abnormalities.

“Eventually, this will create a situation in which a section of the population will say, ‘This can’t happen to me,'” she said, “and everyone else who can’t afford the privilege will be left without options.”

Dr. Brian Scott, a medical geneticist at Massachusetts General Hospital and an advocate for people with Down syndrome, said a lack of education and awareness of genetic conditions is already a problem for people living with the disease, as well as for parents who choose to continue their pregnancy. Prenatal counselors, he said, need to provide expectant parents with accurate, up-to-date information about the reality of these conditions so they can make informed decisions.

As prenatal testing has become more common, selective abortions involving genetic conditions have also occurred. A published review of studies shows that 67% of pregnancies diagnosed with Down syndrome end in abortion.

However, among opponents of abortion, abortion after such a diagnosis is seen as an act of injustice to a weaker party. John Seegopresident of Texas Right to Life, called such situations “tragic,” but added that “we need better answers than the only solution is to cause the death of the child.”

Shigo said his organization supports a Texas bill known as the Rebirth Non-Discrimination Act, which will require genetic counselors to inform patients about prenatal palliative care services and support groups to help them bring the pregnancy to term. At the moment, he said, “the only voices” pregnant women hear in medical conversations are about abortion.

There were no simple answers for Anne in Texas. A 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 support groups for Turner Syndrome and reading about people living with the disorder. Many, she learned, died of heart disease in their 20s and 30s. She also saw a video of a little girl with Turner syndrome receiving her daily hormone injection. The child was screaming in pain.

Then Anne decided to end the pregnancy, fearing the pain Juliet would experience every day. “This decision is out of love,” she said. “It takes the pain away from them when you experience it yourself.”

She made an appointment at a clinic in Colorado in late September. Since the pregnancy was 19 weeks, the procedure would be complicated and expensive, requiring her to stay in Colorado for a week.

She knows that she was lucky enough to be able to travel, which many people in her situation could not do. “I was really angry because I felt that this was something that needed to be done by your doctor and your hospital,” she said.

Soon after the results of the amniocentesis, she began to experience severe spasms. But she did not tell the obstetrician-gynecologist she visited, worrying that the practice would face the choice of abandoning her as a patient or being prosecuted under Texas law for inciting abortion.

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

However, Hercher and others worry that this kind of fear and insecurity could hurt pregnant women. Although 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.

Anne 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 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 situation of her family.

“At no point does this feel like a solution,” she said. “The diagnosis is a decision made for you.”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism on health issues. Along with policy analysis and the survey, KHN is one of the three main operational programs in KFF (Kaiser Family Foundation). KFF is a gifted non-profit organization that provides information on the nation’s health issues.

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