Michigan woman: Hear my story, feel my pain before outlawing abortion

At first, the diagnosis seemed manageable.

Kerstin and Simon were frightened to learn that their unborn daughter might have a heart defect. That she would likely need surgery, maybe even a heart transplant. But it still seemed possible. With treatment and care, there was a path forward, one that led to the family they'd longed for.

Kerstin did not realize, then, that she would never bring her daughter home.

That came later, in a room at Michigan Medicine where a series of soft-voiced doctors delivered the trio of diagnoses that meant something had gone horribly wrong: First, a problem with the baby's heart. Then, a rare and serious brain defect. Finally, cysts that had further limited brain development.

A week later, Kerstin and Simon made the painful decision to end the pregnancy.

Kerstin emailed me this spring, after the publication of a series of columns I had written about the likely fall of Roe v. Wade, the 1973 U.S. Supreme Court decision that guarantees American women the right to choose an abortion.

Kerstin told me that abortion wasn't something she'd thought much about. If asked, she would have said she was pro-choice, but in an abstract way. Abortion wasn't part of her world. Until, suddenly, it was.

If the high court overturns Roe this summer, as it seems likely to do, a never-repealed 1931 law means abortion will become a felony in Michigan. Two lawsuits, filed by Gov. Gretchen Whitmer and Planned Parenthood of Michigan, have asked state courts to rule that the 1931 law is incompatible with state constitution's protection of bodily integrity. A ballot initiative underway will ask voters this fall to explicitly add reproductive rights to the state constitution.

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Kerstin and her husband were able to exercise the right to choose, to make the best decision for their family, in a situation most of us can't even imagine.

Michigan's 1931 abortion ban allows for just one exception — to preserve the life of the mother. It doesn't account for people like Kerstin. And her daughter.

That's why she emailed me: "People need to know my story."

* * *

It was supposed to be a routine 20-week ultrasound. But it was more like 22 weeks, because Kerstin and her husband got COVID-19, and had to postpone the examination to comply with their obstetrician's two-week quarantine requirement.

Kerstin and Simon asked to be identified by pseudonyms. Because of the volatile emotions that surround abortion, they fear becoming targets of violence. The Free Press verified Kerstin's story through a review of medical records.

During the ultrasound, the tech pressed on Kerstin's stomach, hard, and Kerstin could feel her baby moving away from the touch. She worried that the tech's rough handling was causing her daughter discomfort.

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The whole thing felt strange. Stilted. The tech was brusque. Simon was permitted into the exam room at first, then asked to leave.

When it was over, the tech said she had concerns, and wanted Kerstin to wait for the doctor.

So Kerstin waited, alone in the clinic's hallway, for 45 long minutes.

When the doctor arrived, she told Kerstin that there was a problem, a very serious problem.

"We need to get you to UM right away," the doctor said.

Kerstin asked if Simon could come in, and as the doctor went to get him, Kerstin stared out the window. It was late January, and snow was falling.

When Simon came in, he did the talking, because Kerstin couldn't.

"All I was doing was watching the snow fall. I was just paralyzed. I couldn't even ask any questions."

The ultrasound had revealed what Kerstin's obstetrician said was a rare birth defect: hypoplastic left-heart syndrome. The left side of the baby's heart was underdeveloped, affecting blood flow.

Their daughter would likely be born early, by Caesarian section, the doctor explained, and would require immediate surgery. If other surgical interventions didn't work, she'd have to have a heart transplant. Michigan Medicine could tell them more.

Kerstin and Simon were devastated. Both of them were shaking — a reaction she'd always thought was a figure of speech. From their car in the clinic's parking lot, they called their parents, reeling from the shock of it all, trying to explain what little they understood. They stopped for food on the way home, but neither could eat.

* * *

It had been love at first sight.

Simon is European, and Kerstin was studying, then working, in his home country. That's where they met, six years ago, in a nightclub.

Kerstin noticed Simon right away, even though he was far across the room. And he'd noticed her. When she crossed the room, he asked her to dance.

Four years later, they married. Both wanted a family. Kerstin, who works in corporate communications, was homesick, and longed to return to metro Detroit, where she was born and raised. So the couple moved back in February of 2020, just a month before the COVID-19 pandemic began.

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Neither was sure about having a baby during a pandemic. But Kerstin was 36, and time seemed short. Waiting felt like a luxury they couldn't afford. By September of 2021, Kerstin was pregnant.

Until that ultrasound, it had been a joyous pregnancy.

"She was super active. She was always kicking, moving. And every time she did, I was so excited. I felt like I knew her. And I loved her so much. We had ordered her crib, just before we had that bad appointment with our obstetrician. We were just really progressing, and excited to bring her home. The love we felt for her was so intense."

* * *

The posters on the walls of the conference room at Michigan Medicine were hopeful, uplifting images blazoned with inspirational sayings.

There had been a two-hour ultrasound, very thorough. After that, there had been amniocentesis, and an MRI. Kerstin and Simon were at Michigan Medicine most days that week.

When the door of the room with the bright posters opened, a team of doctors walked in.

Kerstin's heart dropped. She had been clinging, improbably, to the hope that things might be all right. But a team of doctors — not one doctor, not a quick dismissal — meant something else.

The obstetrician had misdiagnosed her daughter's heart defect, the doctors explained. Rather than hypoplastic left-value syndrome, it was aortic stenosis, a narrowing of the valve that could only be corrected surgically. For some patients with the condition, the doctors explained, one surgery remedies the defect. For others, it's a lifetime of operations, and learning to live with limitations.

There was more: The ultrasound had also revealed a rare defect in the baby's brain, agenesis of the corpus callosum. There was no connection between the right and left hemispheres of her brain. Babies born with that condition often can't sit up or swallow. They have seizures.

Finally, Kerstin and Simon learned that there were cysts in the baby's brain, and that those cysts had stunted brain development.

The doctors at Michigan Medicine were compassionate and kind, Kerstin said, offering factual information, additional reading, and outlining the couple's options. There was a frank admission that for babies with multiple serious conditions, managing any of them becomes more difficult. Some couples, they were told, choose to continue even a pregnancy with severe challenges.

The first time a doctor said termination was an option, Kerstin and Simon both cried.

Kerstin said she and Simon never felt pushed toward any particular course of action — the decision was theirs alone. They listened to their doctors, read all of the material, and began to accept the severity of diagnoses they'd been given.

If it had been just a heart condition, just one problem, it might have been different. If the threat had been to Kerstin's life — the only exception allowed in Michigan's 1931 law — there was no question, she told me, that she would have carried the pregnancy to term.

Their daughter's life, Kerstin and Simon came to understand, would be defined by suffering, caused not just by the conditions concealed within her tiny body, but from the medical care required to preserve her life.

The idea of that suffering haunted Kerstin and Simon, along with the realization that because their daughter's brain had not developed, she might never understand why.

And that is what they could not bear: Bringing a child into the world only to hurt her again and again.

This is the point in our interview when Kerstin starts to cry.

* * *

The procedure that would end Kerstin's pregnancy began on Feb. 7.

Abortions like Kerstin's, performed after 20 weeks, comprise just 1% of terminations performed in this country. Such procedures are almost exclusively prompted by serious medical problems.

Because Kerstin was 23 weeks pregnant, the first step was to dilate her cervix, with the insertion of sticks called laminaria — a type of seaweed — and wait. The insertion was painful, and Kerstin's doctor warned her the laminaria would likely cause bleeding and cramping. The next day, because her cervix had not dilated sufficiently, more sticks were added.

Waiting at home, she didn't know what to do. It hurt to stand, hurt to sit, hurt to lie down. "I just sat on the couch and cried," Kerstin said. Her mother and husband were both there; they took turns holding her hand, trying to soothe her through the pain.

By Wednesday, her body was ready for the procedure. The medical team explained to the couple what would happen next, and took Kerstin back for surgery.

"I knew in a matter of minutes she was going to die," Kerstin told me. "But the head surgeon grabbed both of my hands, and he held my hands while I was falling asleep. He said that he didn't want me to worry. And he held my hands, and then they put me under the anesthesia."

The doctor had assured her that the procedure would be compassionate, and that her daughter would not feel pain.

"I woke up, and I just I knew she was gone. I could feel myself lightly bleeding. I was in a fog because I was coming out of the anesthesia, and I knew that she was gone."

At home, Kerstin broke down, crying in guttural heaves. Family members tried to call, but she was crying too hard to speak.

It was like that for a long time. Kerstin had taken short-term disability from work, and for two or three weeks after the procedure, she couldn't do much more than sit on the couch, looking out the window. Kerstin's mom was there, cooking and cleaning, easing the couple's burden. Simon was nearly as bad off. Neither knew quite how they would bear the pain.

Because she had been so far along, Kerstin had been showing, and she had begun telling friends and colleagues before the surgery what was going to happen. It was hard to tell people, she said, but everyone was kind.

I ask how she's doing the day of our interview, two months after the procedure.

"That's a really good question," she tells me. "It's funny, I keep expecting every day to be better. But I have to say I'm still in this fog, this fog and this disorientation, looking for meaning in life, meaning in God. I'm trying to go through the motions, trying to feed myself, to get up and put clothes on every day, trying to do my work. But deep down, I think it will be a while before I get out of this fog that I'm in."

Genetic testing conducted at Michigan Medicine has given the couple some hope: What happened to their daughter was a rare mutation, not a trait passed from either parent. They had been phenomenally, tragically unlucky, but it was a set of circumstances unlikely to repeat. They can try again.

* * *

When everything went wrong, Kerstin was near the viability standard of 24 weeks. If she and Simon had gotten COVID-19 one week later, or if the appointment at Michigan Medicine hadn't materialized in time, their options would have been curtailed. Kerstin wonders what happens to women whose doctors recommend one more test, one more appointment, or who need one more day to decide.

No one, she said, should be rushed into this kind of decision.

"It is a personal decision, and so complex, and I feel very strongly, more strongly than ever, that women should decide this with their team of doctors," she said. "These people that sit out there in the U.S. and think that women joyously walk in at 20 weeks and say, 'Oh, I want to get rid of my pregnancy' — that doesn't really happen."

The worst thing that could happen had happened to Kerstin, and this is what she wants to tell the lawmakers who are prepared to allow abortion to become illegal:

"I want them to read stories like mine, or women in a similar situation. Or have a conversation with them, and feel their pain. Feel my pain. And then tell me if you think that decision is correct."

Nancy Kaffer is a columnist and member of the Free Press editorial board. She has covered local, state and national politics for two decades. Contact: nkaffer@freepress.com. Become a subscriber at Freep.com.

This article originally appeared on Detroit Free Press: Michigan woman: Hear my story, feel my pain before banning abortion