Rose Penchansky was on the fence about whether to say something.
She was on her computer, scrolling through a closed Facebook fan group for the Hulu show “The Handmaid’s Tale” shortly after the midterm elections and came across a post about the news that Alabama’s voters had just passed an amendment giving “unborn children” the “right to life in all manners and measures appropriate and lawful.” It reiterated the fact that the state doesn’t protect abortion rights or fund the procedure ― something that could set the stage for abortion to become illegal in Alabama if Roe v. Wade is overturned by the Supreme Court.
Penchansky, 33, watched members of the group debate about which abortions should be legal and which shouldn’t. But after reading one too many strident posts about how abortions should be illegal or illegal after the first trimester, she knew she had to speak up about her second-trimester abortion, scheduled for just a few days later.
“They did an in-depth ultrasound and discovered the baby had hydrops fetalis, pleural effusions, edema and cystic hygroma, and increased risk of Down’s Syndrome and Turner’s Syndrome,” she wrote. “They did emergency amniocentesis. All of that was the easy part.”
“I decided to terminate, my husband agreed,” she continued. This is where it became difficult.”
Penchansky lives in Tennessee, and if she had had health insurance through her employer, she likely would have had coverage for the abortion. But because her husband is in the military, she instead gets her health care through Tricare Prime, the military’s health management organization for family members of military personnel.
And because of a federal law that bans the use of federal funds for abortions for fetal anomalies, the second-trimester termination cost nearly $16,000 out of pocket ― something her family couldn’t afford. Penchansky has turned to crowdfunding in order to meet the costs.
“When the government starts taking a woman’s right away and dictating how they can use their body, so begins the slippery slope into Gilead,” Penchansky wrote, referring to the name of the “Handmaid’s Tale” society that enslaves fertile women. “This is happening to me right now.”
A federal ban on abortion funding affects millions of Americans
The federal government has banned the use of federal funds for abortions since 1976, under what is known as the Hyde Amendment. It blocks states from using federal funds from Medicaid, Medicare or Children’s Health Insurance programs to pay for abortions except in two instances: when a woman’s life is in danger and when the pregnancy results from rape or incest.
This amendment has been used as the basis for more laws that prevent federal funding for abortion, said the Guttmacher Institute, a reproductive rights advocacy organization. This includes laws that prevent the military from paying for abortions for fetal anomalies and extend to anyone employed by the federal government, anyone who gets health care through Veterans Affairs or the Indian Health Service and people in federal prisons or immigration detention centers.
These abortion restrictions affect millions of lives, Guttmacher notes. Tricare covers more than 9 million military members and their dependents, and the Federal Employee Health Benefits program for civilian federal employees covers more than 8 million people and their dependents.
Because Penchansky was young and healthy and had a previous uncomplicated pregnancy and birth, she didn’t qualify for first-trimester screening tests covered by Tricare. It wasn’t until she was 17 weeks along in her pregnancy that she received the results of her first fetal screening of any kind: the quad screen, a blood test that can detect signs of chromosomal abnormalities in the fetus, as well as some conditions in which the brain and spinal column don’t develop properly.
The results weren’t good. It showed that her baby had an increased risk of chromosomal abnormalities and that she needed to see a specialist right away. But there was added urgency for her. Because she got her health care through the military, which doesn’t cover abortions for fetal abnormality, the longer she waited, the more expensive a termination would be.
She moved as fast as she could. A week later, an in-depth ultrasound with a maternal-fetal medicine specialist revealed that half her baby girl’s heart hadn’t developed, she had a large fluid-filled cyst running from her head all the way down her spine and there were large accumulations of fluid in the chest cavity affecting both lungs.
“I pretty much had a mental breakdown in the office,” Penchansky told HuffPost. “My son was with me, and I was really losing it.”
Still, she held on to hope for her daughter that the amniocentesis, a test that can diagnose abnormalities or birth defects, would have promising news.
“I told [the doctor] I wouldn’t terminate unless I knew what was wrong with the baby,” she said. “I didn’t want to just base it off of an ultrasound.”
The results came back at week 20. Her baby was diagnosed with Turner syndrome, which the doctor had suspected because of the large spinal cysts and accumulation of fluid in her body. The chromosomal disorder, in which a female fetus has only one X chromosome instead of two, results in miscarriage 99 percent of the time.
The doctor talked to Penchansky about the “lethal nature” of the combination of the baby’s Turner syndrome, half-formed heart and growing cysts, according to a medical record of the appointment.
She decided to end the pregnancy as soon as possible rather than prolong the baby’s suffering or expose herself to the risk of delivering of a full-term baby with extremely large cystic growths.
“I don’t want to bring a baby into the world that has a 1 percent chance of making it,” she said. “I’m either going to watch her pass away early on, or she’s going to suffer.”
An abortion that far along is an anomaly in the U.S. Only about 1.3 percent of abortions performed in this country happen after 21 weeks gestation.
How abortion restrictions make a tragic situation stressful
The federal restrictions on abortions for fetal anomalies, in combination with state laws that continue to close abortion clinics or make the window of legal abortion smaller, mean more pressure on women and their families in what are already difficult circumstances.
Dr. Neil Silverman, a clinical professor of obstetrics and gynecology at the University of California, Los Angeles, wasn’t involved in Penchansky’s case but reviewed her anonymized medical records.
He said that women like her are dealt a severe blow when they receive news about fatal fetal anomalies and that the situation is made worse by the “external forces” like gestational age cutoffs for abortions, restrictions on medical counseling and waiting periods for abortion that encroach on discussions between patients and doctors.
“I feel strongly that what I might do personally is not what any given woman or family might do, and counseling needs to be able to take all options into consideration, not just pregnancy termination,” said Silverman, who specializes in high-risk pregnancies. “That said, termination can’t be limited by external forces from the critical patient-physician discussion.”
Penchansky agreed. She said the lack of health insurance coverage for the procedure turned an already trying and difficult period of life for her into something stressful and expensive too.
After deciding to terminate, she listened to her baby’s heartbeat with a Doppler fetal monitor every day, but now with the hope that the baby inside her would die before her scheduled abortion.
“If I can’t find a heartbeat, I can go down to labor and delivery on the Army base,” she explained. “They can check, confirm, and then [I] wind up with the dilation and evacuation on the Army base ― and Tricare will pay for it.”
That didn’t end up happening.
Instead, she went through with the abortion ― an induced birth, because she was so far along and the baby’s heart was still beating ― on Nov 15. But by the time she gave birth, the baby no longer had a heartbeat.
“My body thinks I have a baby to feed, my belly is still swollen, and I have typical bleeding,” wrote Penchansky in an email to HuffPost a few days after the procedure. “I have moments where I keep busy and don’t think about it, and moments where something triggers me and I break down.”
But in addition to grieving the loss of their very much wanted baby girl, she keeps ruminating on the cost of the abortion.
Penchansky said she believes that if she could have had a screening test like a nuchal translucency scan in the first trimester, the problems would have been caught sooner ― and she could have easily afforded a $1,000 first trimester abortion at a local Planned Parenthood. In the end, her parents ended up lending her $10,000 for the second-trimester abortion.
Silverman said that it was difficult to say at this point whether the baby’s issues would have been visible in a first-trimester ultrasound but that it was possible.
“It’s very likely that with a large fluid collection like a cystic hygroma seen in the second trimester, that the nuchal translucency typically measured on ultrasound in the first trimester as a screening test might have been enlarged as well,” he said. This would have then triggered more diagnostic testing like chorionic villus sampling or amniocentesis earlier, which would have found the Turner syndrome faster.
Kevin Dwyer, a spokesman for Tricare, didn’t comment directly on Penchansky’s case but said that the health plan complies with federal laws banning abortion except when the mother’s life is in danger or the pregnancy resulted from rape or incest.
He also said that Tricare’s schedule for ultrasounds and other prenatal care is in line with guidelines published by the American College of Obstetricians and Gynecologists, which recommends a first-trimester ultrasound only if the mother has certain symptoms or risk factors.
Like many other military family members during deployment, Penchansky went through all this without her spouse by her side. He is stationed in Texas and didn’t go home for the termination.
They decided that together, she explained, because it took him one year to qualify for the specialized military training that he’s doing now. Instead, her sister and brother-in-law went to be with her and care for her 5-year-old son while she was in the hospital.
Her boy is old enough to know she was pregnant but too young to understand why the pregnancy ended without a baby sibling for him. In the weeks leading up to the induction, Penchansky tried explaining to him several times that the baby in her belly was very sick and that she needed to go to the hospital to take the baby out.
“I asked him if he understands, and he says ‘yes,’” she said. “But then he tells his speech therapist that we’re having a girl.”
This story has been updated to include updated financial details about Penchansky’s procedure.
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