Trisomy 18 syndrome is a fatal chromosomal condition that can be detected during pregnancy. It is also at the center of a new legal case in Texas, where a mother of two seeks an abortion after discovering that her fetus suffers from this devastating condition.
What is happening in the case?
Cox is 20 weeks pregnant and filed a lawsuit this week for a temporary restraining order from the criminal court in Austin, Texas, to block the harsh abortion ban in the state. Her unborn fetus has been diagnosed with Trisomy 18 and is expected to live no more than a few days outside the womb, according to the lawsuit. Currently, Cox cannot obtain an abortion in the state due to its abortion laws.
Cox visited three different emergency rooms last month due to severe pain and undiagnosed fluid leakage, according to the lawsuit. She has undergone two cesarean sections in the past, and the lawsuit claims that continuing the pregnancy “puts her at serious risk to her life and future fertility, including the risk of uterine rupture and hysterectomy.”
On Thursday, Judge Maya Gambl granted Cox a temporary restraining order allowing her to have an immediate abortion. Gambl said during the hearing: “The idea that Ms. Cox desperately wants to be a mother and that this law may take that ability away from her is shocking and will be a real test of justice.”
However, Texas Attorney General Ken Paxton warned Cox’s doctor that she could face civil and criminal penalties if she performs the abortion. The lawsuit attempts to protect the doctor, as well as Cox’s husband – both of whom could face serious legal consequences under House Bill 8, which bans abortion and aiding someone in having an abortion.
The Texas Supreme Court then issued a stay that halts the lower court’s ruling, according to a report from USA Today. Molly Doin, Cox’s attorney, says this will temporarily prevent Cox from obtaining medical care.
Cox wrote an article published in the Dallas Morning News, where she affirmed that this child is wanted but will not survive. She said: “I do not want to continue the pain and suffering that this campaign is causing or to continue putting my body or mental health at risk by the consequences of continuing this pregnancy,” and added: “I do not want my child to come into this world just to watch them suffer.”
What is Trisomy 18 and why is it fatal?
Trisomy 18 syndrome – also known as Edwards syndrome – is a fatal chromosomal condition in all cases except very rare instances, according to Dr. Silvana Rebaud, an obstetrician-gynecologist at NewYork-Presbyterian/Columbia University. “It is nearly always fatal,” she says. Trisomy 18 causes several life-threatening medical problems, including heart defects and organ abnormalities, and many children with this condition die before birth or within the first month of life.
Between 5 to 10% of children born with Trisomy 18 live for more than a year, but they often suffer from severe intellectual disabilities, according to Medline Plus. In addition to heart defects and organ abnormalities, Trisomy 18 can cause a small head and deafness, according to the American College of Obstetricians and Gynecologists. Children with this condition often also have clenched hands with overlapping fingers and misshapen feet (clubfoot), according to the Cleveland Clinic.
This condition occurs in about one in every 5,000 live births, but many fetuses with this condition do not survive to birth, according to Medline Plus. Any pregnant woman can give birth to a child with Trisomy 18, but the odds increase as a woman ages.
Typically
Trisomy 18 syndrome is so severe that children who survive after birth receive palliative care, according to the Cleveland Clinic. There is no treatment for this condition, and care is usually tailored to each child based on the specific abnormalities they face. Children who survive often struggle to feed normally and may require a feeding tube, and they may have spine problems that affect their mobility.
The Cleveland Clinic breaks down the devastating statistics for children with Trisomy 18 who survive after birth as follows:
– 60% to 75% live to their first week.
– 20% to 40% live to their first month.
– No more than 10% live past their first year.
The 10% who live past their first birthday require significant support from family and caregivers and do not learn to walk or talk. “Because the syndrome is usually severe, the quality of life for children who survive after one year typically requires a significant amount of supportive care and intervention,” says women’s health expert Dr. Jennifer Wider to Yahoo Life.
How can you get tested for it?
There are several potential tests for Trisomy 18. “Ultrasounds can start in the first trimester of pregnancy,” says Erica McDonald, a genetic counselor at Cornell Health, to Yahoo Life. “Blood draws are available after 10 weeks of pregnancy.”
“These screening tests are very accurate at detecting the syndrome,” says Dr. Kartik Venkatesh, a high-risk obstetrician and epidemiologist at the Wexner Medical Center at Ohio State University, to Yahoo Life.
Additional tests to confirm the diagnosis include Chorionic Villus Sampling (CVS), which is performed between the 10th and 13th weeks of pregnancy, according to Venkatesh. This test takes a small sample of cells from the placenta to look for genetic conditions. Another testing option is amniocentesis, which can be done between the 15th and 20th weeks of pregnancy and involves taking a sample of the amniotic fluid to test for Trisomy 18 and other health conditions, according to Wider.
“Diagnostic testing using CVS or amniocentesis can be done quickly, safely, and accurately in-office with ultrasound by a Maternal-Fetal Medicine specialist, with final lab results available within one week after the early placenta or amniotic fluid sample is taken,” says Venkatesh.
McDonald points out that it is rare – less than 1% – for another pregnancy to be affected by Trisomy 18. “There are rare cases where the odds may be higher due to a chromosomal anomaly in the parents themselves,” she says. “Additionally, the baseline chance for any woman to have a child with Trisomy 18 increases with age, so a person’s age-related risk should also be taken into account.”
What does it feel like to receive the diagnosis?
Other families have shared their stories around the heartbreaking diagnosis of Trisomy 18. “It opened my eyes,” said Melissa, a mother in her forties from Arizona, to The Cut, noting that receiving a diagnosis of Trisomy 18 changed her perspective on abortion. “I worked as a patient care technician in a hospital in the mother and baby department. I had a mother who gave birth to a child with Trisomy 18,” Melissa shared. “I thought that the baby wouldn’t live after the first labor contraction I saw. I worked three night shifts in a row, and that baby was still alive. But he was struggling to breathe and grappling with his own fluids because the esophagus didn’t connect to the stomach. It was tragic. I was just someone from the outside coming in to check the mother’s signs, and I saw how bad it was.”
It was
providing several expensive travel options for Melissa to get an abortion, she ultimately obtained pills from Mexico to perform a medication abortion at home. Melissa, who was previously against abortion, says this experience “made me open my eyes.”
“We have no chance,” wrote Lauren Miller, a thirty-something Texas mother, in her pregnancy journal about her twins for The Guardian. She details everything from her excitement about finding out she would have twins to trying to get the necessary care after learning that one of her children had Trisomy 18. “I want to vomit. I can’t find the words to describe the devastation this is causing,” she wrote after receiving the diagnosis. “Our boy has no chance.” Miller ultimately described her doctor saying: “This child will not survive to birth. You must go to another state.”
Miller ended up needing to travel to Colorado to get an abortion for her baby with Trisomy 18. “One day, I will carry my children and tell them that I love them and that they have a little brother named Thomas,” she wrote. “Thomas, who did not live but will be with us forever. I will explain that mercy can be heartbreaking. I will explain that the abortion of their brother was born out of love.”
Sarah Bellman wrote an opinion piece for the Columbus Dispatch in October, reflecting on her decision to continue her pregnancy with a daughter she named Phoebe, who was stillborn due to Trisomy 18. “Early on, we were told she had Trisomy 18 and that she was ‘incompatible with life’,” Bellman wrote. “I carried her for 34 weeks while we loved her intentionally every day. She passed peacefully. While we could not bring Phoebe home or carry her alive, she was very much alive within me. We did not lose a pregnancy, we did not lose a ‘potential human being’.”
Bellman continued: “We lost a daughter and sister and cousin and granddaughter. Phoebe made us better people, reminding us of the value of life. She taught us to love more fiercely.”
Anabeli Lopez, 44, made headlines early in 2023 when she shared that she needed to travel from her home state of Florida to Washington D.C. for an abortion after discovering her baby had Trisomy 18.
Florida laws allow for exceptions to save a woman’s life, prevent serious injury, or in cases where the fetus has a fatal birth defect, but two doctors must confirm in writing that the abortion is medically necessary, according to the Miami Herald. Lopez said her doctors were too afraid to write the letters confirming she needed the abortion.
Lopez said, “We felt it was our duty to protect our daughter from the suffering of neglect if she were to make it to term,” and added, “We made the painful decision to end the pregnancy we wanted so much.”
Professional golfer Hayden Spring told the Fort Worth Star-Telegram in April 2021 that he and his wife Emma did not expect to bring their daughter Sage home after she was diagnosed with Trisomy 18 during Emma’s pregnancy.
Spring said, “If you search for ‘Trisomy 18’ and talk to doctors, things seem very bleak. We weren’t very optimistic when going to the hospital to give birth,” and added, “We didn’t bring a car seat. We had nothing simply because we were told her life would probably be 24 to 72 hours after birth. But she surpassed that 48 hours, and the doctor did an ultrasound of her heart, and the result was a little different from what she had been diagnosed with before birth.”
After
Two and a half months in the hospital, and after undergoing a stomach transplant, Sage returned home. Spring said at the time, “It was a long road, but we are lucky to have her home. For now, she is doing well and growing.”
Sage passed away in November 2023, according to an Instagram post by Spring. Attendees at the funeral were asked to wear pink in her honor.
Source: https://www.aol.com/trisomy-18-why-fatal-genetic-204425784.html
.lwrp .lwrp-list-item .lwrp-list-no-posts-message{
}@media screen and (max-width: 480px) {
.lwrp.link-whisper-related-posts{
}
.lwrp .lwrp-title{
}.lwrp .lwrp-description{
}
.lwrp .lwrp-list-multi-container{
flex-direction: column;
}
.lwrp .lwrp-list-multi-container ul.lwrp-list{
margin-top: 0px;
margin-bottom: 0px;
padding-top: 0px;
padding-bottom: 0px;
}
.lwrp .lwrp-list-double,
.lwrp .lwrp-list-triple{
width: 100%;
}
.lwrp .lwrp-list-row-container{
justify-content: initial;
flex-direction: column;
}
.lwrp .lwrp-list-row-container .lwrp-list-item{
width: 100%;
}
.lwrp .lwrp-list-item:not(.lwrp-no-posts-message-item){
}
.lwrp .lwrp-list-item .lwrp-list-link .lwrp-list-link-title-text,
.lwrp .lwrp-list-item .lwrp-list-no-posts-message{
};
}
Leave a Reply