A ‘twisted’ experience: How KY’s abortion bans are depriving pregnant patients of health care
BY ALEX ACQUISTO
On the way to her 20 week ultrasound, Amy English texted her family group chat inviting guesses on her baby’s biological sex.
“Baby boy English muffin!” her father in-in-law texted.
“I thought boy at first but I’m thinking girl now,” her sister-in-law said. “My official guess is a girl :).”
It was December 28. Earlier that morning, Amy, 31, her husband David, and their 20-month-old daughter Annie had celebrated a belated Christmas at their house in Louisville with family visiting from out of state.
Amy and David had planned this pregnancy, and it was, in a way, perfectly timed. Their baby’s due date was five days after Annie’s birthday. Her children would be two years apart almost exactly to the day — a reality Amy was “ecstatic about.”
Sitting in a fluorescent-lit room inside Baptist Health Louisville, Amy looked for familiar shapes on the screen as an ultrasound tech probed her abdomen. Familiar with radiology in her career as a physical therapist, she has a baseline understanding of how to read ultrasounds: gray shapes usually indicate fluid, and bone shows up as white.
Amy remembers seeing her baby’s arms, legs and the curve of its back. But there was no recognizable outline where the skull should be.
“I couldn’t see the top of my baby’s head,” Amy said in an interview with the Herald-Leader. “I kept waiting for the tech to move the probe in a way where we could see what we should be seeing. I could tell she was searching for it, too.”
Amy had also learned in school about anencephaly, a severe fetal birth defect impacting the brain and skull. A lack of folic acid early in pregnancy increases the likelihood of this happening. This possibility flashed in her mind but she quickly batted it down; she’d been taking her prenatal vitamins, rich in folic acid, for months even before discovering she was pregnant.
The tech paused, then spoke.
“What we’re looking for here is an outline of the baby’s head, and right now I’m not really seeing that,” the woman explained before calling in Amy’s longtime OBGYN.
Over the next few minutes, Amy remembers the room blurring as she heard her doctor use the word “acrania,” which is when a fetus matures through pregnancy without ever developing parts of its skull. It can spur anencephaly, when the brain, too, is underdeveloped and partially missing. Pregnancies with either of these conditions are nonviable.
Amy’s baby, which they learned was a boy, had both. He would not survive into childhood, likely not beyond a few minutes after birth.
This, alone, was devastating news. Her dismay was compounded the next day when she learned that terminating her nonviable pregnancy, even by way of an early induction — a commonplace and provider-recommended method of treatment for such a diagnosis — couldn’t happen.
Even though Amy’s baby would never survive outside her womb, the pregnancy still had a fetal heartbeat — a technicality, considering the diagnosis. Coupled with the lack of immediate threat to her health, her doctors explained they couldn’t induce labor, much less give her an abortion. Kentucky laws forbade it, they said.
“I don’t know what was more shocking: to find out the baby had anencephaly, or that I would have to go out of state to get this care,” Amy said.
Kentucky’s abortion bans do not legally permit the standard of care treatment for a nonviable pregnancy like Amy’s. As a result, doctors must refer patients needing otherwise medically-recommended terminations out of state in droves, along with people desiring elective abortions, according to interviews with seven providers across four hospital systems. Providers who terminate pregnancies in violation of the trigger law can be charged with a felony in Kentucky.
Though this scenario is increasingly common statewide, it’s one arbiters of the state’s laws have yet to remedy, and one lawmakers are not publicly working to resolve.
Kentucky’s trigger law, enacted in late June 2022, criminalizes abortion except to prevent a “substantial risk of death,” or to “prevent the serious, permanent impairment of a life-sustaining organ of a pregnant woman.” The fetal heartbeat law also includes these exceptions but otherwise bans abortion except in a “medical emergency” once fetal cardiac activity begins, usually around six weeks.
Any time a pregnancy is terminated, each law requires a provider to document in writing why it was necessary to, in the case of the six-week ban, “prevent the death of the pregnant woman or to prevent a serious risk of the substantial and irreversible impairment of a major bodily function of the pregnant woman.”
The law permits the Cabinet for Health and Family Services to audit any licensed health care facility to make sure its abortion reporting requirements are “in compliance” with the law.
Both bans allow physicians to use their “reasonable medical judgment” when deciding whether pregnancy terminations are medically necessary. But providers interviewed for this story said that guidance is antithetical with the rest of the law’s limits, which only permit terminations in medical emergencies. There are no exceptions for fetal anomalies, or for the gamut of conditions that may make a pregnancy nonviable but don’t pose an immediate or emergent health risk to a pregnant person.
Moreover, the lack of uniform guidance from the state on what’s considered an emergency means definitions across hospitals sometimes vary, the Herald-Leader found. This has created a legal thicket for health care institutions. As a result, the final say on some critical medical decisions affecting pregnant patients is falling not to medical experts, but to hospital attorneys and administrators, who are worried about legality, liability and reputation.
The Herald-Leader asked the University of Kentucky, UofL Health and Baptist Health for insight into how their respective risk management teams and providers are navigating the laws. None responded to multiple questions about respective protocols for deciding when terminations are legally defensible, or how risk management teams, administrators and providers go about deciding.
“Clinicians have a responsibility to provide compassionate, evidence-based care and counsel to their patients, and also comply with the law,” Baptist said in a statement.
“UofL Health is committed to provide comprehensive health care to all its patients and their families,” UofL said in a statement. “In the case of a nonviable pregnancy that poses a health risk to the mother, we explain options for care while complying with all state and federal laws.”
“Although we cannot discuss when or how our legal counsel gives advice,” UK HealthCare said, “in Kentucky, state law prohibits the University’s physicians and staff from performing abortions except when the mother’s life is in danger. In the case of a nonviable pregnancy, our health care staff work with patients to determine the best course of care for the patient that is consistent with state and federal law.”
‘WE COULD NOT PROVIDE THIS SERVICE HERE’
The morning after Amy learned her baby likely had a fatal birth defect, the diagnosis was confirmed at a second ultrasound with a high-risk specialist. The buoyancy and excitement of the prior day was replaced with dread and grief. Amy remembers the quietness of the room during the second ultrasound, the hollow clicking of the keyboard keys and the intermittent clicking of the computer mouse.
Baptist Health refused to make Amy’s doctor available for an interview. But their conversation was outlined in Amy’s medical records, which were provided to the Herald-Leader.
“I discussed this finding with the patient and offered my sincerest condolences — that this was not compatible with life and that I am so sorry she and her husband are in this situation,” the doctor wrote in her notes. “She was understandably tearful.”
Amy listened as her provider explained her two options: Amy could carry her son to term and deliver him via C-section. He would immediately be taken to palliative care, where he would live a few minutes, maybe hours. Grief counselors would be on standby.
Her second option was to terminate the pregnancy early by way of an abortion or preterm induction. “Choosing not to continue the pregnancy: we discussed that this is also a loving choice for a baby that will certainly not survive,” her doctor wrote.
Pre-trigger law, termination under these circumstances would’ve happened in a hospital, and Amy’s health insurance likely would’ve covered it.
“No part of me wanted to be pregnant anymore,” Amy said. “Every flutter and kick he gave felt like a literal gut punch reminder that I would never get to take him home.”
Strangers were already approaching her at the grocery to ask to touch her stomach. Her patients at work often asked how far along she was. It seemed emotionally unthinkable to continue subjecting herself to a life where, at any moment, she would be forced to repeat that her growing body was nurturing a baby that wouldn’t live, she said.
Termination was what Amy wanted. She erupted into sobs when her doctor told her that under her current circumstances (her life wasn’t immediately threatened, and there was still a fetal heartbeat) it wasn’t an option.
“We discussed that due to our current Kentucky laws, we could not provide this service here,” her doctor wrote in her records.
“I’m sorry, I’m sorry, I’m so sorry,” Amy remembers the specialist saying.
She gave Amy a list of hospitals and clinics in surrounding states that might be able to terminate her pregnancy. Her doctor recommended calling Northwestern Memorial Hospital in Chicago, or another clinic in Illinois, where abortion is widely available.
“Am I just supposed to Google the number, call the front desk and ask, ‘How do I get an abortion at your hospital?’” Amy remembered thinking.
Over the next few days, she, her husband and sister-in-law cold-called a handful of clinics to request a dilation and evacuation abortion, common in the second trimester. But a combination of abortion restrictions in Indiana and Ohio, including gestational limits on when abortion is legal — Amy was 21 weeks along at this point — left her with few options.
Then, Amy’s sister, a nurse anesthetist at Northwestern Medicine Kishwaukee Hospital in Dekalb, west of Chicago, stepped in. Her hospital lacked the equipment for a D&E, but they agreed to induce Amy.
On January 4, after driving close to 400 miles, Amy was induced and gave birth to a son she and her husband named Solomon Matthew. He didn’t cry. His heart beat for about two minutes before it stopped.
‘NOT KNOWING WHAT TO DO’
The Republican-led General Assembly has made no moves to amend or further clarify either abortion ban since both took effect seven months ago, even though the combined impact has harmed patients, doctors have told lawmakers.
The Kentucky Supreme Court still hasn’t issued a preliminary opinion on whether either law infringes on a person’s constitutional right to bodily autonomy and self-determination. Deciding so would temporarily block one or both bans from being enforced. Convened for a regular session through March, the Republican supermajority has yet to file any bills related to reproductive health care access and likely won’t until the high court weighs in.
In the meantime, there’s disagreement about whether or not either ban infringes on providers’ ability to dole out the standard level of care to pregnant patients.
Kentucky Supreme Court Justice Michelle Keller and former Deputy Chief Justice Lisabeth Hughes raised this point during November oral arguments in the pending court case from the state’s two outpatient abortion clinics challenging the constitutionality of both laws.
The trigger law “doesn’t recognize an exception for women who are under the care of a physician who tells them that the standard of care would be to terminate the pregnancy,” Hughes told Solicitor General Matt Kuhn, arguing on behalf of the Attorney General’s office.
As a result, “What’s really happening is physicians in (hospitals) all over the commonwealth are calling the risk managers and attorneys for the hospitals not knowing what to do,” Keller added. “You’re obfuscating what this trigger statute says. There isn’t a strict life of the mother exception.”
The law’s proponents, including Republican Attorney General Daniel Cameron, have cited the provision in the law that allows for use of “reasonable medical judgment” as protecting doctors’ autonomy, and that any challenge to that fact is overblown.
“The law has an explicit health exception, (which) depends on a ‘reasonable medical judgment’ from physicians,” Kuhn told Kentucky Supreme Court Justices that day. There’s been “a lot of misinformation” suggesting the law doesn’t adequately protect a pregnant person’s health, he said, citing two advisories Cameron’s office has issued since both measures took effect. Both clarify that in vitro fertilization, and abortions as treatment of miscarriages, preeclampsia and ectopic pregnancies don’t violate the law.
As for the host of other conditions not mentioned, “we are continuing to work with Kentucky doctors giving guidance on that,” Kuhn said.
But no written evidence of that guidance appears to exist. In response to an open records request from the Herald-Leader, Cameron’s office said this week it had no written or electronic records of communication between the Attorney General’s office and licensed health care facilities or providers regarding the trigger law or six week ban.
‘AN UNNECESSARY PHYSICAL AND PSYCHOLOGICAL RISK’
It was mid June when Leah Martin, 35, discovered she was pregnant with her second child.
Pregnancy at ages 35 and above is considered geriatric. Aware that her age meant she faced a heightened risk, she opted for genetic testing early on to gauge any abnormalities.
Her first ultrasound didn’t raise any alarm. At just over nine weeks, Leah took a prenatal genetic test. The results a week later showed “low fetal fractal numbers,” she said in an interview.
That result, her OBGYN told her, could mean there hadn’t been enough material collected to show a clearer result. It could also signal an abnormality.
Leah, wanting to be judicious, got a more exact genetic test just before 12 weeks. She quickly learned her fetus had triploidy, a rare condition that causes the development of 69 chromosomes per cell instead of the regular 46. It causes not only severe physical deformities, but triploidy stunts development of crucial organs, like the lungs and heart. It means a fetus, if it even survives to birth, will likely not live beyond a few days.
What’s more, Leah was also diagnosed with a partial molar pregnancy, which causes atypical cells to grow in the uterus and, as Leah’s doctors told her, could lead to cancer.
It was mid-July, and Kentucky’s trigger law and six week ban had been in effect for barely two weeks. Leah was familiar enough with what both laws restricted and assumed that because her pregnancy could cause her cancer and was nonviable, she would lawfully qualify as an exception.
So, she weighed her options with her doctors at Baptist Health Lexington, who included Dr. Blake Bradley, her longtime OBGYN.
Similar to Amy’s diagnosis, Leah’s doctors told her that even if she opted to carry the pregnancy to term, her baby “would live a short life in palliative care, most likely never leaving the hospital. It would really be a quite painful existence,” she said.
“I have a 2-year-old at home, and I’m 35, weighing how I would like to expand my family. It seemed like the safest option for me and the compassionate choice for my unborn child was to terminate the pregnancy,” she said.
Like Amy’s, a medically-necessary abortion under these circumstances would typically take place at a hospital, doctors interviewed for this story said. Leah’s health insurance had already agreed to cover it. It was also the quickest way to help Leah to her end goal: getting pregnant again in order to birth a child that would survive.
It was July 21 and Leah was just over 12 weeks pregnant when she learned that Baptist’s legal counsel had blocked her doctors from giving her a dilation and curettage abortion.
“I was told the hospital refused to perform the procedure while the case was being litigated. I was dumbfounded,” Leah said. Hospital lawyers cited an ongoing lawsuit from Kentucky’s two outpatient abortion providers that’s pending before the Kentucky Supreme Court.
According to Leah, hospital providers, relaying the message from administration and risk management, reportedly said if her fetus died on its own, doctors would be able to terminate her pregnancy. But their hands were tied as long as it had a heartbeat.
“People minimize that pregnancy, even under its best circumstances, is associated with life-threatening risks, life-altering risks and emotional impacts,” Bradley told the Herald-Leader. “So, to compel a woman to continue a pregnancy that is by everyone’s assessment, doomed, by definition places that woman at an unreasonable and unnecessary physical and psychological risk, period.”
Baptist Health refused to make Leah’s high-risk doctor available for an interview.
The following Monday, July 25, Leah had an ultrasound at the hospital to confirm what she already knew. As an ultrasound tech probed her abdomen, a wheel of dizzying emotions spun in her head: she desperately wanted a baby, but she didn’t want to birth a child into a painful existence.
Already faced with a gutting dilemma, she felt further burdened by having such an intimate choice ripped from her. And she was furious at now being forced to remain pregnant despite there being no chance for survival, despite the risks continuing such a pregnancy posed to her own body.
She remembers staring at the ultrasound screen waiting to hear the muffled heartbeat of her fetus, racked with guilt because she hoped she wouldn’t.
“It was such a twisted experience being pregnant with a baby I desperately wanted, lying there hoping its heart had stopped,” she said shakily. “It was horrible to have to wish for that in order to receive care. It just felt so unsafe and cruel.”
Leah had already arranged to drive to Chicago to get an abortion when a Jefferson Circuit judge issued a preliminary injunction on July 22, temporarily blocking the state from enforcing both bans. She immediately called EMW Women’s Surgical Center in Louisville — one of the plaintiffs in the lawsuit against the state — and made an appointment.
On Wednesday, July 27, almost 13 weeks pregnant, Leah paid $950 out of pocket for her abortion. Her insurance wouldn’t cover it, since it was considered elective. The following Monday, the Kentucky Court of Appeals overturned the circuit court injunction, reinstating both abortion bans.
After Leah’s abortion, she sent a message to her high-risk doctor. Her doctor responded the following day. Leah shared that correspondence with the Herald-Leader.
“You’ve been on my thoughts a lot,” her doctor wrote. “Words cannot express the dismay I feel right now. I’ve spent my whole adult life learning how to care for mothers in heart wrenching or dangerous situations like yours, and the politics now make it not only impossible, but to work to take care of patients like they deserve — with compassion and science — in these horrible situations is wrong and immoral.”
“I hope your procedure yesterday was smooth, though I know it was hard,” her doctor wrote. “I’m so sorry we could not (were not allowed, rather) to take care of you here.”
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Molar Twin Deliveries with Coexisting Fetus at Term: Concerning Two Uncomplicated Cases of Gestational Trophoblastic Tumor, From 2015-2021, In Conakry, Guinea
Abstract
The coexistence of a molar pregnancy with a live fetus is a rare entity of difficult diagnosis and treatment. Continuation of the pregnancy until full-term delivery is possible. We report two cases of twin molar deliveries observed empirically from 2015-2021, in the gynecology-obstetrics department of the Donka national hospital and in the maternity ward of the Jean Paul II hospital in Conakry. The discovery was made on ultrasound of the first trimester of pregnancy and macroscopic examination of the placenta. One of the neonates was alive, a healthy female and the other was polymal formed with facial dysmorphism, omphalocele and sexual ambiguity, fresh stillborn. There was no maternal complication towards a gestational trophoblastic tumor (T.T.G) in both cases. Efforts must be made in the prevention of T.T.G. by screening for twin molar pregnancies with healthy fetuses on transvaginal ultrasound in the first trimester, the dosage of HCG in the face of unexplained metrorrhagia, macroscopic observation of the placenta after each delivery and biopsy sampling of any suspicious placenta.
Introduction
Complete moles with a coexisting fetus, evolving at term with spontaneous vaginal delivery, without fetal and maternal complications, are rare. Early diagnosis of this association leads in the majority of cases to termination of pregnancy on the one hand because of the frequency of triploidy and on the other hand because of the maternal risk and the possibility of progression to persistent trophoblastic disease [1]. We report two particular cases of twin molar deliveries at term without fetal complication and without progression to maternal gestational trophoblastic disease in the gynecology-obstetrics department of the Donka national hospital, the Teaching Hospital (C.H.U) of Conakry and in the maternity ward of the Jean Paul II hospital in Conakry.
Patients and Observations
Case 1
This was Mrs. D.F.B, aged 19, primigravida and primiparous, with no particular history, admitted while in labor at the gynecology- obstetrics department of Donka National Hospital, Conakry Teaching Hospital, with two results of ultrasound performed with a transparietal probe during her pregnancy. These results did not mention any notion of hydatidiform mole or associated congenital malformation. The pregnancy would have progressed normally until its term without maternal or fetal complications. It was only after the delivery of a fresh stillborn, polymalformed (with facial dysmorphism, omphalocele and sexual ambiguity) child, that the macroscopic examination of the placenta made it possible to make the diagnosis of presumptive mole twin by the presence of a normal placenta attached to a vesicular mass characteristic of a mole. The biopsy sample allowed the histological diagnosis of a complete mole. The post molar follow- up had been organized without maternal complication 61 days before the closure of the service for renovation, on October 5, 2015.
Case 2
This was Mrs. H.C, seamstress, 30 years old, gravidity of 5 and parity of 5 including a twin birth and a laparotomy for ruptured ectopic pregnancy (GEU), who came on her own for a consultation for incoercible vomiting, physical asthenia on a menorrhea of 3 three months, June 19, 2020. The clinical examination had objectified a uterine height greater than the age of amenorrhea and dating ultrasound had made it possible to observe, intrauterine, a normal eutrophic fetus of 13 weeks – Amenorrhea (W.A) and a poorly vascularized heterogeneous multicystic mass. The beta HCG serum marker level was 16000IU/l. We had concluded a twin molar pregnancy and animated counseling on the interest of a medical termination of pregnancy to avoid the risks associated with serious maternal complications of trophoblastic tumor including choriocarcinoma. The couple, after a delay of two weeks, had opted to continue the pregnancy until its term. A pregnancy monitoring and childbirth preparation plan had been drawn up with the pregnant woman, whose morphological ultrasound at the 23rd W.A of the second trimester carried out on 03/09/2020, which had objectified a mass of 81 x 97 mm, in previa position. The pregnancy had progressed, without fetal and maternal complications, at 40 WA 2 days and ended with a vaginal delivery of a normal female child, alive and weighing 2830 grams. The woman had benefited from active management of the third stage of labor (TSLM) and digital uterine dissection to confirm the uterine cavity. Macroscopic examination of the adnexa had confirmed the presence of two separate placentas, joined together (Figure 1), one of which appeared normal and linked to the umbilical cord and had a histologically confirmed vesicular mass of “complete mole”. The planned post-molar follow-up was regular with progressive regression of the beta HCG level until negativity on the fortieth day of delivery without any clinical particularity on the closing date of January 31, 2021.
Discussion
The diagnosis of the association of a live fetus with a normal karyotype with a hydatidiform mole is often difficult, especially in the absence of revealing clinical signs [2,3]. The diagnostic modalities of molar twin pregnancy associating a complete mole with a healthy fetus were different due to the early ultrasound detection in the first trimester and the observation of the placenta. The lack of diagnosis of the coexisting mole during pregnancy despite the two ultrasound examinations in the first case would be linked to the age of the ultrasound scanners, which are often second-hand, the technique used (endovaginal in the first trimester or transparietal) and of the operator’s experience in the first observation. Early ultrasound detection made it possible to develop a follow-up plan for pregnancy, childbirth and postpartum in the second case. In the event of a twin pregnancy associating a live fetus and a molar pregnancy, the pregnancy can be continued until term if the patient wishes after having been informed of the risks and the most frequently reported complications (hemorrhages, late miscarriage, fetal death in utero and preeclampsia) [3]. Evacuation of the pregnancy is required only in cases of fetal anomalies or deterioration of the maternal condition [4]. The probability of obtaining a live birth varies between 16 and 56% [5] or 16 and 60% [4] deliveries. The continuation of the pregnancy is against payment given the risks of immediate and distant maternal complications. Close monitoring of the mother and fetus can help achieve a favorable outcome [4]. We accepted monitoring despite the maternal risks for one of our two pregnant women. The two pregnancies resulted spontaneously in the normal delivery at term of a healthy living fetus and another which would have succumbed to its multiple malformations per partum. The most feared complication is progression to gestational trophoblastic disease [1]. The diagnosis of postmolar Gestational Trophoblastic Tumor (G.G.T.) can be made according to criteria such as the persistence of h.C.G detectable more than 6 months after uterine evacuation and the histological diagnosis of choriocarcinoma [5]. According to Ikram Boubess et al., who adopted termination of two of these pregnancies, one remotely progressed to an invasive mole [6]. Regular monitoring of h.C.G levels throughout pregnancy and the postpartum period is necessary to detect GTN [7]. For Suksai M et al., a pregnancy with an initial serum h.C.G level of less than 400,000m.U.I/ml is a good candidate for the continuation of the pregnancy and the achievement of fetal viability [8]. The incidence of post-molar GTN is higher in twin pregnancies combining a complete hydatidiform mole (CHM) and a normal fetus than in single CHM [9].
Conclusion
Spontaneous evolution of the association of molar pregnancy with a live-to-term fetus, without immediate fetal and maternal complications, is possible. The most formidable complication, gestational trophoblastic tumor, choriocarcinoma, was not observed during the study period. The prevention of this complication requires the training of providers in endovaginal ultrasound, its systematic practice in the first trimester of pregnancy, ultrasound and biological monitoring of suspected cases during pregnancy, systematic macroscopic examination of the placenta with biopsy of cases suspect for histological confirmation.
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