Katie Sacra and her husband knew their next child had a one in four chance of inheriting the same genetic disorder that left their first son severely disabled.
Still, they rolled the dice and got pregnant — hopeful and optimistic the odds would be in their favor.
“I clung to 75%, hoping this is the healthy baby we wanted,” Sacra, 39, of Myrtle Beach, recently told The State.
Then came devastating news.
The fetus was developing with the same, life-threatening genetic disorder their son was born with. That disorder has translated into years of agony for the family as they have made decisions about treatments, surgeries and other medical decisions for their son aimed at extending and improving the quality of his life.
With their second pregnancy, they faced repeating the same heartbreaking ordeal.
Torn between desperately wanting to grow their family, but also wanting to spare another child the same pain, they made the heart-wrenching decision to end the pregnancy.
It’s a deeply personal story Sacra has shared several times now, including before state lawmakers weighing whether to outlaw or severely restrict access to abortion in South Carolina.
Some S.C. Senate Republicans are hoping to fast-track the state’s latest effort to curb access to abortions: a so-called fetal heartbeat ban that would effectively ban abortion around six weeks of pregnancy, before many women know they are pregnant.
On Tuesday, a Senate Medical Affairs subcommittee took four hours of testimony on the bill, which already has passed the state House. The panel did not vote on the proposal, but the goal is to pass it out of committee and get it on the Senate calendar in time for lawmakers’ return to Columbia in January.
But Palmetto State Republicans are not the only ones pushing for deeper restrictions on abortion. The S.C. bill is part of a flurry of new laws sweeping state legislatures. Such bans, passed in other states including Alabama, Georgia and Missouri, so far have been held up in court and blocked or overturned by judges.
Courts have said the bans violate the 1973 U.S. Supreme Court decision that affirmed a woman’s right to an abortion before a fetus is viable outside the womb, usually about 24 weeks into a pregnancy. But abortion opponents see an opening under conservative judges appointed by President Donald Trump to spark a court challenge that overturns or scales back Roe v. Wade.
These national efforts to restrict abortion access have led Sacra and other S.C. women to speak up about their own experiences with abortion in an attempt to illustrate the circumstances that lead some women to terminate pregnancies.
While reproductive rights advocates drive home a woman’s constitutional right to the procedure, and opponents say abortion amounts to murder, the stories of how S.C. women came to choose abortions are often strikingly different in tone than the political ones that dominate the debate.
A Columbia mother said she sought an abortion out of economic necessity: She could not afford another child, already a single mother providing for herself and her young son while working a minimum wage job.
A Rock Hill mother said she held her aborted child in her arms. The fetus, not yet 20 weeks along, was wrapped to hide his severely malformed body, including organs that developed outside of his body.
“Abortion, like so many things in our current climate, has become wildly polarized, mainly because it seems easy,” Sacra of Myrtle Beach told lawmakers in 2017 during a hearing over a proposal that would have outlawed abortion.
“It seems black and white. But it can’t be. I am proof that it isn’t. My family is proof that it isn’t. ... These are not black and white considerations. You need to appreciate the subtleties, the tones, the shades of life’s color.”
Then there’s the story of the lifelong regret that some women say accompanies the decision.
For a Conway woman, having an abortion in college forever changed her and her husband’s lives. It later led the couple to establish a center to help women facing unplanned pregnancies in hopes they choose to not to have abortions.
The couple said they favor legislation that would end abortion, period. And they hope state lawmakers will move with more urgency to further restrict the procedure.
“It’s always this presentation of: ‘It’s your choice. It’s your right. The freedom to choose,’ ” said Jeannie Scott Smith. “But they never talk to you about what you’re going to endure if you make that choice. It’s the aftermath of abortion.”
‘A way to make abortion illegal’
State lawmakers’ efforts to ban abortion at about six weeks follows their recent success at banning the procedure — with significant exceptions — at 20 weeks of pregnancy.
In 2016 state lawmakers successfully passed into law a bill that outlawed abortion at 20 weeks, except for women seeking the procedure to protect their lives or health or in the case of a severe, life-threatening fetal anomaly. Calling the 20-week law unconstitutional, critics said it would face challenges in the courts, but it hasn’t yet.
A key sponsor of the 20-week ban, who is also pushing passage of the fetal heartbeat ban, said he would support adding similar language to the six-week ban. However, he also said he is not willing to go so far as to provide exceptions for genetic disorders or other birth defects that are not imminently fatal after birth.
Currently, state law allows abortions at 20 weeks or more of pregnancy for “profound and irremediable congenital or chromosomal” anomalies “incompatible with sustaining life after birth.”
“This whole issue ... breaks down to whose rights are more fundamental — the unborn child’s or the mothers?” said state Sen. Larry Grooms, R-Berkeley. “I fall on the side of valuing the life of the unborn child ... higher than a woman’s right to abortion.
“Anything that can be done to a child after birth, apply that to a pre-born child and see if that makes sense,” Grooms continued. “Ask that same question of a 1-year-old handicap child. Society wouldn’t tolerate euthanasia for a 1 year old who is handicap, and so society should not tolerate abortion for pre-born children.”
The state’s latest abortion statistics show most of the women seeking the procedure at 20 weeks or later do so for two reasons for which current law provides exceptions, which is consistent to what opponents of the law said at the time, arguing the law would only create a barrier between women and their health care providers.
Out of the more than 4,600 abortions performed in the state in 2018, just six occurred at 20 weeks or more of pregnancy. All were for fetal anomalies, according to state abortion statistics from the Department of Health and Environmental Control.
State data shows 44% of women who sought abortions in South Carolina in 2018 did so at six weeks or earlier. More than half — 55%— received an abortion between seven and 13 weeks post-fertilization.
In the last 20 years, the number of abortions performed in South Carolina has been cut almost in half — a dramatic downward trend that has coincided with a steady beat of efforts to curb access to the procedure.
At the same time, more and more S.C. women are getting abortions outside of South Carolina, according to an analysis by The State of national and state abortion statistics.
The fetal heartbeat bill would outlaw abortion about half way through the first trimester, before many women know they are pregnant. The proposal provides exceptions when the pregnancy endangers the mother’s life or physical health, or in cases of rape or incest, but provides no exception for severe fetal anomaly — birth defects that mean a child has little or no chance of surviving outside the womb.
“It’s a way to make abortion illegal, without saying it explicitly,” said 44-year-old Rock Hill mother and educator Christina Selle, who — with her doctor — made the decision to have an abortion to spare her child suffering and to protect her own health.
“It wasn’t just a mistake that I wanted to fix at 19 weeks pregnant. It was a medical necessity,” Selle said.
Proponents of the state’s latest effort to curb abortion — the 6-week ban — argue the presence of a heartbeat indicates life and means that an abortion amounts to murder.
“From the beginning of the pro-life movement, one of the first mottos was abortion stops a beating heart and that is a truthful statement,” said Holly Gatling, executive director of South Carolina Citizens for Life.
“And then the opposite side of that is we don’t send human beings with beating hearts to the morgue. We believe that in a civilized society …. that everyone can agree that when there’s a heartbeat, there’s a life.”
But Selle’s and Sacra’s stories illustrate how much desired pregnancies that go horribly wrong can complicate a would-be parent’s decision about whether it’s the right thing to do to bring a child into the world. The two women said they see their decisions as merciful, loving moves to spare a child suffering.
Medical professionals, too, called the bill “dangerous” and “short-sighted,” testifying that it imposes more barriers and access to healthcare for women facing wanted, but horribly complicated pregnancies.
“There’s no way to tell if those cells are healthy and whether those cells will continue to divide correctly,” said Sacra of Myrtle Beach. “At anytime, anything can go wrong. ... At six weeks, women are just missing their period. How in the world are they suppose to know if that child is going to be healthy?”
‘A choice we had to make’
Selle was married with a 6-year-old, in her senior year of college and about to complete her final semester internship to receive her teaching degree when she learned she was six weeks pregnant.
At eight weeks along, her baby was developing normally, according to an ultrasound. At 12 weeks, the baby’s heart sounded fine and a blood test for cystic fibrosis came back clear during a routine check up.
Selle, 31 at the time and apprehensive about the pregnancy after having had difficulty conceiving her first son, began settling into being pregnant.
At 16 weeks, she went back to the doctor for a routine blood test to check for risk of birth defects and genetic disorders.
She was driving to pick up library books for her students on March 26, 2007, when her doctor called. The blood work came back showing elevated risk for spina bifida — a birth defect that occurs when the spine and spinal cord do not form completely.
“I got back to school before the students returned to class, so I sat in the bathroom and cried until they returned,” Selle said.
Three days later, she and her then-husband met with a genetic counselor and Selle received an ultrasound exam.
“The ultrasound tech had not had the monitor on for 30 seconds when she turned it off, looked at us and said, ‘I want you to know before I go on I have some concerns,’ ” Selle recalled. “Then she handed me a box of tissues.”
Selle saw her baby on the screen, legs crossed and fists clinched.
“I will never forget the words the doctor used, ‘I am sorry, but your baby is incompatible with life outside the womb,’” Selle said.
A hole in his spine, legs fused together. The arteries leaving the heart were reversed. Fluid had built up pressure on the brain, and the abdominal wall did not form all the way, meaning organs normally in the belly were outside his body.
She and her then-husband were given three options: Continue with the pregnancy and see what happens, do an amniocentesis to test for a genetic disorder or “interrupt” the pregnancy.
Should she continue with the pregnancy, her doctor warned that as the fetus grew, he would run out of room and rupture her uterus with his legs, which were fused together and paralyzed. If he made it to term, he would begin to die as soon as the umbilical cord was cut.
The couple chose to terminate the pregnancy at 19.5 weeks.
“This was not a choice we wanted to make, but rather a choice we had to make,” Selle said. “It was a choice out of love for our unborn child.”
The child, Selle said, “was not put together right.” She and her husband could not bear to bring him into this world only to suffer.
Five days later, she arrived at the hospital and began signing the necessary paperwork, including granting permission to stop her baby’s heart.
“When they explained the form my legs literally gave out. My husband had to catch me,” Selle said.
A nurse held her hand as she silently cried during the procedure, telling her “only a good mom would let her baby go and never suffer.”
Twelve years later, Selle took to Facebook to vent her frustration over the ongoing debate and efforts in South Carolina and other states to ban abortion. The now mother of two — sons ages 10 and 17 — was incensed by characterizations of women who had second trimester abortions as “uncaring, unloving mothers.”
“You see, I am the face you don’t want to know,” Selle wrote. “I chose to end my child’s life. ... A child that would suffer pain at birth, a child I wanted more than anything, but couldn’t have,” she continued. “A child my arms ached to hold.”
“Just understand that you are thankful that you’ve never had to make this choice, but leave it at that — A CHOICE,” she wrote. “Remember, you don’t always know best, sometimes that mother does.”
‘We were blindsided’
Sacra and her husband were unwitting carriers of a genetic disorder. Neither had a family history of the disease.
In 2000, the couple gave birth to their son, only to discover they passed on a rare autosomal recessive genetic disease estimated to present in 1 in 50,000 U.S. births.
“We were blindsided,” Sacra said. “It was a small abnormality late in pregnancy. There was no testing at the time we knew to do that would have shown (up) in utero. Until he was born and diagnosed, there was no way to know.”
Children with Zellweger spectrum disorder typically do not survive beyond the first year of life, according to the U.S. National Library of Medicine. There are currently only about 200 cases in the world of people living with the disorder, including Sacra’s son.
Now 19, Sacra said her son suffers from hearing and vision loss, seizures, bone deformities, liver disease, adrenal insufficiency, intellectual disability and feeding problems requiring a feeding tube.
“My child beat the odds. He is continuing to beat the odds,” but at a great cost, she said.
“I still sleep with a baby monitor next to my head,” Sacra said. “I still watch for the rise and fall of his chest. I still change his diapers, feed him, dress him, bath him, brush his teeth.”
Not all pregnancies have a fairy tale ending, and families are presented with agonizing decisions, Sacra said.
“I have held a child near end of life with this disorder,” she told lawmakers. “I have seen firsthand how devastating and cruel it is.”
Which is why, in 2007, she and her husband, hoping for a second child, chose to terminate her pregnancy in the second trimester. They made the decision after genetic testing done at 11 weeks revealed not only the presence of the disease, but Turners syndrome as well. The chromosomal disorder affects development in girls.
Sacra and her husband tried again, and became pregnant in 2008 and 2010. Both pregnancies were again terminated in the second trimester after testing revealed the same genetic condition.
“Allow parents to make already difficult and heartbreaking choices to prevent additional and unnecessary suffering,” the 39-year-old mother aid. “I was doing something I felt was loving. I was making a loving choice for myself, for my baby, for me and for my son.”
‘Everything inside of me was screaming ‘STOP!’
A pendant of two small footprints hangs around Jeannie Smith’s neck with the name of her unborn daughter, Abigail. Inscribed on the back is the date — Jan. 7, 1993 — “that she went to be with the Lord.”
“I carry her in my heart, because I can’t carry her in my arms,” said Smith who ended up getting an abortion eight weeks into her pregnancy.
Her daughter would have been 26 years old this month.
Smith was 19 when she became pregnant, had just graduated high school, was taking some college courses and casually dating.
Coming from a “broken home” raised by a single mother and facing an unplanned pregnancy, Smith said an overwhelming sense of fear, confusion and uncertainty drove her to make “a wrong decision.”
A friend advised she look into getting an abortion.
Smith called a local clinic, where someone “began to encourage me that this was the right thing to do.”
No counseling was offered and no guidance really given of other options, she said.
“They asked me how far along I was, and I said that I was eight weeks (pregnant),” she said. “And I remember her specifically saying, ‘Perfect, you’re right where you need to be.’ It was presented to me as if this was the only option.”
Her boyfriend, and the father of the unborn child, was conflicted but ultimately supported her decision.
“I told him, ‘I don’t really care what you want. This is my body. This is what I’m going to do,’ ” Smith would later recall as part of a testimonial of healing from the tragedy of abortion in a 2011 short film “Set Free.”
“I wanted a bright future and a career path — wanting to grow up and be something significant in this world,” she told The State. “I felt at the time that the pregnancy would eliminate all of that ... and that it was a problem I created and that I needed to deal with.”
Smith remembers a cold, dreary day when she walked into the clinic for the procedure.
“I remember walking into the clinic with a broken heart, hoping that what I was getting to walk through would help me feel better,” she said.
She said she was placed in a room filled with other girls and posters on the wall reading, “You have the right to choose” and “It’s your decision.” A video also played with the same message.
None of the girls in the waiting room made eye contact.
She walked down a hallway and was greeted by a nurse who took her into an exam room to prep her for the procedure.
“I remember the sound of a vacuum ... and rolling my head to the left and beginning to cry,” Smith said. “And inside it felt like everything inside of me was screaming ‘STOP!’”
In the car ride home, Smith rocked back and forth. At home she sat on the floor and cried for hours.
“The thing that kept coming to my mind is, ‘Why didn’t anybody tell me I’d feel this way,” she said of the shame, guilt and the pain of her decision.
Smith “fell into a pit” of depression for 14 years after her abortion. She said her self-image was shattered. She abused drugs and alcohol, and stayed in verbally abusive relationships into her early 20s.
She would go on to earn her degree, graduating at the top of her class as a physical therapy assistant.
“But inside I was still dying from the pain of that abortion, and no one knew,” Smith said.
It nearly destroyed her marriage with her husband, Carter.
“There would be times I would find her in the closet crying,” he said.
Smith began volunteering at a crisis pregnancy center in Greenville, which offered an abortion recovery Bible study support group.
“It really was a miracle,” she said. “Emotionally, physically, spiritually, everything changed from that Bible study in my life.”
Smith would write a book about her experience, and In 2013 the couple founded Coastline Women’s Center in Myrtle Beach. The crisis pregnancy center provides clinical testing and exams, referrals, counseling and other support to women and couples struggling with unplanned pregnancies in the hopes they will choose against having an abortion.
“And we talk to women every day that’s been impacted by abortion in some kind of way. And they’re broken,” Smith said.
An ‘attack on poor women’
Thirty-one-old Columbia resident Kymberly Smith was in her mid-20s, separated from her husband and living with her parents and her 5-year-old son, when she became pregnant.
She was casually dating and working a retail job making minimum wage of $7.25 an hour.
“I was just not financially able or emotionally capable of having another child,” she told The State. “I could barely take care of myself and my child. We lived in a new house and stretched to pay rent and utilities.”
She said the family didn’t stay in the house across from Walmart on August Road in West Columbia much longer, “because we couldn’t afford it.” After living in the home for about two years, the family moved into apartments off Broad River Road.
Smith said her maximum take-home pay for two weeks worth of full-time work was $500, and she was paying $100 a week for childcare.
“There was never a thought to have this baby,” Smith said.
She chose to have an abortion at six weeks. Her mother objected. For two weeks the two did not speak a word to each other.
Six months later, Smith received a tubal ligation to prevent her from getting pregnant again.
Smith, a community organizer and activist who now works full-time as a caption assistant for the deaf, called South Carolina’s proposed abortion bans and those passed in other states “a direct attack on poor, working-class and non-working women.”
“Abortion is health care,” she said. “It’s an attack for us not to have the health care we need. We already are the least insured and have the least access to health care ... and the least paid in most of our jobs,” she said of black and indigenous women.
Smith called the so-called “pro-life” bill hypocritical. She argued if lawmakers truly cared about nurturing life, they would pass laws to make health care better, safer and more accessible to women, support expanding Medicaid and increase aid and programs for children.
“We’re looked at as these horrible people who want to kill babies. We’re not,” Smith said. “We just want to make a choice about our body. We know what we can financially do. We know what we can afford.
“We know what is best for us.”