Sitting in the genetic counselor’s office that afternoon, she learned her 12-week-old developing fetus likely had Turner syndrome, a chromosomal abnormality.
By Kelcie Moseley-Morris, Idaho Capital Sun, May 10, 2023
Jennifer Adkins’ first pregnancy was near-perfect.
She sailed through her appointments and screenings with no complications, ticking every box and making lists of all the right questions to ask her medical professionals. By the time her unmedicated labor was over and the nurses placed her newborn son on her chest, Adkins felt like a superhero.
So when she discovered she was pregnant again the day after Valentine’s Day, she was ready for another home run. The baby would be due on Halloween, and she and her husband affectionately referred to it as “Baby Spooky.” Maybe they’d find out the sex beforehand, maybe it would be a surprise. They hadn’t decided yet.
On April 21, Adkins saw her doctor for a routine screening by ultrasound to measure the collection of fluid behind the fetus’ neck. And even without a medical degree, she could tell by the picture on the ultrasound that something was wrong. Sitting in the genetic counselor’s office that afternoon, Adkins learned her 12-week-old developing fetus likely had Turner syndrome, a chromosomal abnormality that ends in miscarriage in 99% of cases.
Turner’s occurs when one of two X-chromosomes for a female is deleted, often from all cells. The few babies that do survive still have deletions in some cells that cause significant heart defects, fertility issues, kidney abnormalities and a range of other disabilities.
The normal measurement is less than 3 millimeters, according to Dr. Maria Palmquist, a maternal-fetal medicine specialist at Saint Alphonsus Regional Medical Center in Boise, Idaho. Palmquist said Adkins’ fluid measured at 11.7 millimeters, with additional fluid accumulating under the skin and around the body of the fetus, known as edema. The combination of increased fluid and skin edema is a condition known as hydrops fetalis, a severe form of swelling that is often fatal.
“The doctor said basically, lightning struck this pregnancy, there’s nothing you can do,” Adkins said. “This just happens in 1% of all pregnancies.”
Following the U.S. Supreme Court’s decision in June 2022 to overturn Roe v. Wade and allow states to regulate abortion access, 14 states have enacted near-total or total abortion bans, while others continue to pass abortion ban laws that become tied up in state and federal court. The patchwork laws create reproductive health care deserts, sometimes as much as an eight-hour drive or a flight across the country, forcing pregnant people to travel at great financial and often emotional costs, even if the termination of the pregnancy would prevent devastating health effects.
There are no abortion bans yet that criminalize the pregnant person. Instead, criminal penalties are focused on medical providers or others who help someone obtain an abortion. The charges in most states are felonies, with punishment ranging between two years and life in prison, and physicians face suspension or revocation of their medical licenses.
Because Adkins lives in a state with an abortion ban, she faced one of two options: Either continue carrying the pregnancy knowing it would almost certainly end in miscarriage or stillbirth and jeopardize her own health in the process — or make a trip out of state for termination.
‘Do we try? But for what purpose?’
Idaho has a near-total ban on abortions that applies to any stage of pregnancy, with exceptions for cases of rape and incest with an accompanying police report during the first trimester or to save a patient’s life. Health care providers who violate the statute put their medical licenses at risk and face between two and five years in prison, along with civil penalties of $20,000 against individual providers if family members decide to sue.
Since Roe fell, residents in states with bans like Texas have to travel much farther to obtain an abortion. The Texas Observer reported the average number of miles a resident must travel increased from 44 miles to 497 miles. Texans often go to New Mexico, where some abortion providers fled and opened new clinics. Washington abortion providers have reported seeing patients from seven states around the country within one day.
In the Southeast, where nearly every state has a highly restrictive ban, states such as Louisiana and Mississippi are hours away from the nearest abortion clinic. For many, the closest state is Florida, and the outcome of a Florida Supreme Court case over a law banning abortion at 15 weeks could determine whether a six-week ban signed in April by Republican Gov. Ron DeSantis will go into effect. If it does, the distance to access abortion for many residents in that region of the country will become much greater.
A study released in April conducted by international reproductive health care journal Contraception found that women who were forced to travel for abortion care described it as emotionally burdensome, saying it caused distress, anxiety and shame.
“Because they had to travel, they were compelled to disclose their abortion to others and obtain care in an unfamiliar place and away from usual networks of support, which engendered emotional costs,” the study said. “Additionally, travel induced feelings of shame and exclusion because it stemmed from a law-based denial of in-state abortion care, which some experienced as marking them as deviant or abnormal.”
Adkins said seeking care in another state made her feel like a criminal and a medical refugee of sorts, and she worried about what others would think of her for terminating. Another physician she saw for a separate issue wanted to keep the pregnancy out of her record entirely as a precaution.
“They make this out to be like people that seek abortions are horrible, horrible people, and murderers, and all this stuff, and I’m like, that could not be further from the truth. This is a baby that we love with all of our heart and soul. And because we are loving parents, we are choosing this route, not only to be loving parents to that baby, but also to our living son, because I have to think about what’s in my best interest so that I can still be here and be healthy enough to take care of my son who needs me,” Adkins said.
Idaho physicians have also stopped making referrals for patients in situations similar to Adkins’ in the wake of a legal opinion sent by Attorney General Raúl Labrador at the end of March. Until there is a decision in a lawsuit over the opinion, physicians and Planned Parenthood facilities in Idaho have said they will not make any referrals for abortion-related care outside of the state.
Adkins said if she wasn’t as informed about the state’s laws, she wouldn’t have understood what doctors were saying about her options.
“They said that I was welcome to leave the state on my own accord and seek health care outside of the state,” Adkins said. “It was a very odd experience because we were talking basically in code. … I understood the nuance, and I understood what they were implying, but it was a very surreal experience.”
A brief filed in the lawsuit on behalf of a health system in Idaho detailed a scenario nearly identical to Adkins’ on the same day she was diagnosed at a different facility. Like the case outlined in the brief, Adkins would be at risk for developing a condition called mirror syndrome, which causes the pregnant person to experience similar symptoms to that of the fetus. Dr. Palmquist told States Newsroom that it can lead to preeclampsia, a life-threatening state of high blood pressure in pregnant people that can cause seizures and organ damage.
Knowing all of this, Adkins decided it was in the best interests of her family, including the nearly 2-year-old son she already had and the daughter she would never get to hold, to terminate the pregnancy.
She hoped to miscarry within the following week so they wouldn’t have to make the emotional three-day trip. So she scheduled another ultrasound, but there was still a heartbeat. She was desperate to fix it — desperate to stop being a walking coffin for a dying dream.
“It’s hard knowing that my body and the fetus are trying so hard to hang on,” Adkins said. “And we had to make a really hard decision. Do we try? But for what purpose? There’s no sense in bringing a child into this world that’s not going to survive anyway or have severe complications. And it’s not fair to any of us.”
Idaho legislators made minor changes to the state’s abortion law toward the end of the legislative session in March with House Bill 374, working in conjunction with the Idaho Medical Association to craft language that would clarify certain instances where the fetus has already died or ectopic or molar pregnancies would not fall under Idaho’s abortion ban.
An earlier iteration of the bill also included a clause exempting medical professionals from criminal liability if they deemed an abortion was necessary “to prevent the death of the pregnant woman or to treat a physical condition of the woman that, if left untreated, would be life-threatening.”
That bill was scheduled for a hearing in the House State Affairs Committee on March 22, but in the same meeting, the committee chairman announced the bill wouldn’t be heard after all, on that day or any other. The decision came the morning after Idaho Republican Party Chairwoman Dorothy Moon sent out a “call to action” to party members telling them to call representatives on the committee and ask them to vote the bill down.
As Democratic legislators angrily protested the removal of the health language from the bill on the House floor, Rep. Julianne Young, R-Blackfoot, said doctors and patients face challenging decisions at times in pregnancy, including members of her family who work in medical professions. But before Roe v. Wade, she said, many of the health conditions doctors referenced wouldn’t have been known until the baby was born.
“There was no question about delivering a baby with birth defects; you just had a baby, and then you did the best you could to take care of it,” Young said in her debate. “In some ways, having the technology we have takes away some of the gift of being able to wait and deal with whatever comes.”
Maternal-fetal medicine doctors continue fleeing to other states
Idaho legislators made minor changes to the state’s abortion law toward the end of the legislative session in March to clarify that certain instances where the fetus has already died or ectopic or molar pregnancies would not fall under Idaho’s abortion ban, declining to proceed with an earlier iteration of the bill that included a clause exempting medical professionals from criminal liability. In that version, providers had to determine if an abortion was necessary “to prevent the death of the pregnant woman or to treat a physical condition of the woman that, if left untreated, would be life-threatening.”
Dr. John Werdel, an obstetrician-gynecologist at St. Luke’s in Boise, said he wasn’t sure if Adkins’ situation would have qualified under the health language in the original bill. She likely would have had to wait until the health effects were more severe, he said.
Many reproductive care physicians in states where abortions are banned have left to practice in other states in recent months, including one maternal-fetal medicine doctor in Tennessee who moved to Colorado in January after starting what she described as a dream job in Tennessee in August.
Idaho’s abortion laws caused Palmquist, one of three maternal-fetal medicine physicians at Saint Alphonsus, to take a job at Desert Perinatal in Las Vegas, Nevada. She is one of several specialists in the state to leave over the new laws since January. She was packing her belongings on Thursday, hoping the laws change soon and allow her to return.
“Since June, it’s just become so complicated to take care of pregnancy complications. Things before that were so straightforward now make us take an extra four to six hours and multiple meetings,” Palmquist said. “Making sure we’re protected by EMTALA, making sure this is an emergency medical condition. Does the hospital administration agree, does legal counsel agree? All of that.”
A recent study published in the Journal of General Internal Medicine found from a survey of more than 2,000 current and future physicians on social media that 82% preferred to work or train in states with preserved abortion access. More than 76% of respondents said they wouldn’t even apply to states with legal consequences for providing abortion care.
“At least monthly, we are faced with caring for moms with significant complications, and there’s no chance of a viable outcome. But with Idaho’s restrictions, there’s a lot of anxiety about essentially practicing the standard of care,” Palmquist said. “A year ago, it would’ve been just so straightforward, and now there’s all this caution and hesitancy.”
The mounting costs of abortion care
Adkins and her husband left their son with grandparents to make the trip to Oregon on a Thursday for her appointment the following morning. The Northwest Abortion Access Fund and Cascade Abortion Support Collective helped pay for a hotel room, a rental car and the surgical procedure, which was $850 by itself without insurance. Friends and family sent her Venmo donations for other expenses.
“I just started calling organizations because I was like, I don’t know what to do. And they said, ‘We’re here to help you.’ And it was so relieving but also absolutely heartbreaking to hear multiple times from multiple people, ‘You are not the only one. We get stories like yours all the time, every day,” Adkins said. “Every day.”
The Planned Parenthood clinic was supportive and professional, she said, and they honored her request to be deeply sedated for the procedure. When she told them why she needed to terminate the pregnancy, they offered to take ultrasound photos beforehand.
“Everybody was like, ‘Oh my god, I’m so sorry you had to come all this way for this,’” Adkins said. “And they’re right. I shouldn’t have had to leave my son and travel hundreds of miles to do this.”
Since the procedure was performed in another state and at a Planned Parenthood clinic, Adkins had to ask the doctor to collect the remains of the fetus, the pregnancy tissue and the placenta and package them properly to be sent to a genetic testing clinic. She was also faced with rushing the package of remains to FedEx herself that same day.
While she doesn’t regret the decision, Adkins said it was a painful experience that could have been much easier if she had been able to access care in her own state.
“I deserve better, and so does everybody else,” she said. “We can’t stop things from happening in pregnancy. That’s why we have modern medicine, to help guide us and protect the things we do have control over. So if we can’t stop those horrible things from happening … why make it even worse by making the worst experience someone has to go through — learning that they will not give birth to a happy, healthy baby — why do we make that even worse by saying, ‘We don’t value your life enough to try to save it or prevent something bad from happening to you in the meantime?’”
FEATURED IMAGE: An ultrasound image of Jennifer Adkins’ 12-week-old fetus that was diagnosed with Turner syndrome and hydrops fetalis, two defects that are often fatal to the fetus and dangerous for the pregnant person to carry. Adkins had to seek an abortion in Oregon because, like 13 other states across the country, Idaho has a near-total ban on abortions without exceptions provided to preserve the health of the pregnant person. (Courtesy of Jennifer Adkins)
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