Ann was fifteen weeks pregnant when her prenatal genetic results came back in August. Her husband had planned to name her daughter Juliet after her. However, the test revealed that she was missing one of her X chromosomes, a condition known as Turner syndrome. This can lead to dwarfism, infertility and heart defects.
Ann and her husband were told by a genetic counselor that many people choose to end their pregnancies following this diagnosis. The counselor gave Ann and her husband more bad news. Within two days, Texas would have eliminated the option for them. As of September 1, 2021, anyone can sue anyone who assists any person to get an abortion in Texas. The state also provides $10,000 to plaintiffs if they prevail. Ann was told by the genetic counselor that she couldn’t discuss termination anymore with her.
Ann said, “At that time, I thought, ‘It doesn’t matter; it’s not giving up on the pregnancy.’” Ann requested that her middle name not be used due to privacy concerns and possible legal repercussions for her husband, medical providers, or herself in Texas’ confusing legal framework. Ann considered herself pro-life. However, the diagnosis needed to be confirmed by amniocentesis or ultrasound.
After reading about the condition, she was shocked at how severe it could be. Even if Juliet was able to survive birth, which was statistically impossible, her child would need hormone shots every day and could be in hospital frequently. This would cost $60,000 annually. Ann worried about the impact of having this child on her three other children.
Most abortions take place before 13 weeks. People who seek abortions after that time often cite obstacles to care or medical complications. Texas law effectively bans all abortions. Many women don’t know they’re pregnant until six weeks. Genetic conditions cannot be diagnosed before 11 weeks with prenatal tests.
Ann’s situation will soon be replicated across the country. On June 24, the U.S. Supreme Court upheld Mississippi’s law that prohibits abortion after 15 week. It also overturned 1973 Roe v. Wade decision, which guarantees the right of abortion. According to the Guttmacher Institute (a research organization that supports abortion rights), at least half of the states will ban abortion.
Only 10 states that have gestational limits on abortion had previously allowed exemptions for lethal conditions before or after birth. There are no exemptions for severe but not lethal conditions. People who cannot afford to have a child with a disability or travel to a clinic outside of the state may find themselves in difficult financial situations without such exemptions.
Families who have just found out that their child will not survive birth or will be diagnosed with a debilitating condition are now faced with additional trauma.
Lauren Westerfield is a Houston-based prenatal genetic counselor. She said that Texas’s law makes it difficult for her to do her job fully. Due to the Supreme Court’s decision, trigger laws, she expects counselors in Texas and other states where abortion has been made illegal or will soon be, will not practice.
She replied that when patients inquire about termination she would tell them “Legally, Texas doesn’t allow you to do so.” “I can’t even describe the look on their faces when they hear that.
Many patients are forced to continue the pregnancy to full term. Westerfield estimates that at least 75% her patients who would have ended their pregnancies had been prevented by the state’s law.
It is not known what the consequences of a woman who cannot terminate a pregnancy due to genetic anomalies. A study of 1,000 women who were refused abortions due to their gestational limits showed that they were more likely than others to become poor and have worse health.
Laura Hercher, Sarah Lawrence College’s genetics expert and ethicist, fears that restrictive abortion laws could lead to genetic disorders occurring almost exclusively in poor families. This is especially true as technological advances have made it easier to diagnose prenatally. Wealthier individuals could travel to other states to have an abortion, or in vitro procedure that screens for genetic anomalies.
She said that “Ultimately, it will lead to a situation in which one part of the population will say, ‘This cannot happen to me’.” Everyone else who can’t afford this privilege will be left without any options.
Dr. Brian Skotko is a Massachusetts General Hospital medical geneticist and advocate for Down syndrome patients. He said that a lack of awareness and education about genetic conditions is a problem both for those with the disorder and for parents who are deciding whether to carry on a pregnancy. He said that prenatal counselors should be able to provide accurate and current information to parents about these conditions in order for them to make informed decisions.
Prenatal testing has become increasingly common. This has also led to more pregnancies with genetic conditions being terminated. According to a review of published studies, 67% of Down syndrome pregnancies end in abortion.
However, abortion opponents see terminating a pregnancy following a diagnosis as an act against a weaker party. Texas Right to Life president John Seago called these situations “tragic”, but said that there must be better solutions than “the only way to end the pregnancy is to kill the child.”
Seago stated that his organization supports the Texas Preborn Non-Discrimination Act. This bill would require genetic counselors in Texas to inform pregnant women about prenatal palliative and support services to help them carry their pregnancy to term. He stated that pro-abortion voices are the only ones pregnant women hear in medical discussions right now.
Ann in Texas was not satisfied with the results. An amniocentesis to check Juliet’s anatomy and an ultrasound to confirm the worst result a week later confirmed that Juliet had severe heart problems and muscular problems.
Ann joined Turner syndrome support groups, and began reading about the lives of people with the disorder. She learned that many people die of heart disease in their 20s or 30s. She also saw a Turner syndrome video in which a little girl was getting her hormone injections every day. The child was in agony.
Ann was afraid of the pain Juliet would experience every day and decided to end her pregnancy. She said, “This is a love decision.” It’s a way to take away their pain by actually experiencing it.
In September, she made an appointment at a Colorado clinic. The procedure was complicated and costly as the baby was only 19 weeks old. She had to stay in Colorado for one week.
She realizes she was lucky to be able to travel. Many people in her position could not afford it. She said, “I was really mad because I felt like that was something that should have been done by your doctor”
She began to experience severe cramping shortly after her amniocentesis. She didn’t tell her obstetrician, as she was afraid that she would be dropped from the practice or sued under Texas law.
Seago stated that the law only applies to abortions performed in Texas. Helping someone obtain an abortion elsewhere would not be considered a crime.
Hercher and others are concerned that this uncertainty and fear could endanger pregnant women. While Texas’ and many other states’ laws allow for exemptions to protect the health of a mother, it is not clear how each state will interpret this.
Ann had her abortion on Sept. 28, a month after her initial diagnosis that had made the family’s joy a nightmare. She held her daughter before Juliet was cremated.
She has been a member of support groups for mothers who have had to end their pregnancies due to medical reasons in recent months. They are not only a supportive and understanding community but also understand the family’s unique situation.
She said, “At no time does it feel like an actual decision.” “The diagnosis is a decision made for you.
KHN (Kaiser Health News), a national newsroom, produces in-depth journalism on health issues. KHN, along with Policy Analysis and Polling are the three main operating programs of KFF (Kaiser Family Foundation). KFF is an endowed non-profit organization that provides information to the nation on health issues.
