(CNN) Jill Hartle might seem an unlikely advocate for abortion rights, but after a devastating pregnancy loss, she's raising her voice.
A conservative Christian and former Ms. South Carolina, Jill was a Republican until last summer, when in the wake of new abortion restrictions in her state, she endured the "excruciating" experience of terminating a pregnancy with a baby who had a severe heart defect.
Because of South Carolina's abortion laws, Jill and her husband, Matt, had to spend weeks waiting for availability at a clinic out of state, fly there, endure wrenching time away from their family and support system, fly home the day after a painful three-day medical procedure, arrange for their daughter's remains to be shipped back to them and find thousands of dollars to pay for it, "all while grieving the loss of your child," Jill said.
The Hartles, who say they've always supported abortion rights, have now formed the Ivy Grace Project, named after their daughter who died, to educate the public and policy makers about fetal anomalies, which are often detected four or five months into a pregnancy -- too late in states like South Carolina to terminate a pregnancy.
"It's not fair for the government to tell you what you should or should not do," Jill said.
The Ivy Grace Project is just a few months old, but Jill says already it has had an impact.
"I got messages this fall -- 'I've never voted blue in my life, but I decided to vote blue because of your, Matt and Ivy's story,' " Jill said. "There are so many of their constituents who do not want (a six-week abortion ban), and I need the Republican party to understand that, because I do think it will ultimately alienate some of their conservative (constituents) and then they in fact will then vote across party lines."
CNN reached out to sponsors of South Carolina legislation that restricts abortion rights.
The primary sponsor of a Senate bill, Sen. Larry Grooms, said, "I regret to hear about the (Hartle) family and of their baby with a heart defect. However, I remain committed to protecting the lives of children from those who would choose to end those lives."
As the Hartles told their story to CNN, Matt's hand rested on his wife's knee, comforting her as she remembered the emotional details.
Jill, 35, grew up in the town of Moncks Corner, South Carolina, going on retreats with her Christian youth group and attending sleepaway summer Bible camp with her twin sister.
In 2012, at a mutual friend's wedding, Jill met Matt, a college football coach who'd moved back home to Charleston three days before.
Matt, 40, a cellarman at a local brewery, says that when he saw Jill walk into the reception, he turned to his mother and said, " 'There she is! That's the one!' "
Matt proposed on the edge of the Grand Canyon in 2019, and the couple married in Mount Pleasant, South Carolina, in April 2021.
A year later, excited that she might be pregnant, Jill swung by a CVS near the hair salon she owns in Charleston to get a test. At work at the salon, she was thrilled to see the positive result.
Her twin, Brett Brock, was nearby, and together the sisters devised a plan to tell Matt. After she finished work, she went shopping for "Dad shoes," and presented the white sneakers to Matt, with the positive pregnancy test on top.
"As soon as I opened that shoebox with the white shoes and the pregnancy test, I felt different," Matt said. "I immediately felt like a Dad and a father - my whole role now is to protect my family."
Matt would need to take on that role sooner than he thought.
At a routine ultrasound on July 27, when Jill was 18 weeks pregnant, their obstetrician came in the room and said, " 'her heart isn't what we want it to look like,' " Jill remembers.
The diagnosis was a severe form of hypoplastic left heart syndrome, a condition where the left side of the heart has multiple malformations and can't pump blood properly. An ultrasound a month later, when the baby was larger and the heart could be seen more clearly, confirmed the severity of the diagnosis.
The Hartles say the doctors offered them two options.
One, Jill could carry Ivy to term. Their care team explained she might be stillborn, and if she was born alive, she would be given medicine for the pain caused by her failing heart, and could live for a few days at the most.
The second option was that Ivy could have an open-heart surgery in her first week of life, but Jill says her doctors warned that she likely wouldn't survive it. Babies with hypoplastic left heart syndrome who do survive the first surgery then have another open-heart procedure at around 6 months old, and a third before age 4. These surgeries are not a cure, and even after the three procedures, these children may need a heart transplant, according to the US Centers for Disease Control and Prevention.
In states with less restrictive abortion laws, doctors can offer a third option: terminate the pregnancy.
Pediatric heart doctors say patients often choose that option. Dr. Joseph Forbess, surgical director of the Children's Health Program at the University of Maryland Medical System, said in his program, most parents opt to terminate when the fetus has hypoplastic left heart syndrome.
"We're basically talking about a child who's going to have, at best, a chronic medical condition that limits their cardiac output," he said. "And they're going to need a lot of high-level medical care their entire life."
Heather Woolwine, a spokesperson for the Medical University of South Carolina, where Jill got her care, said that "the mortality rate associated with Hypoplastic Left Heart Syndrome is high in the first year of life and severe complications plague most survivors."
The Hartles prayed for guidance.
"I grew up in a very Christian conservative household," Jill said. "I'm a very faithful woman. I live my life with faith."
They researched hypoplastic left heart syndrome, talked to another family who'd been in their situation and asked questions of their care team at the Medical University of South Carolina.
"Our goal is to provide all the information families need to make their decision," said Paige Babb, the prenatal genetic counselor who worked with the Hartles. "Jill and Matt were so thoughtful with everything."
After prayer, research and discussion, Jill said her "mother intuition" told her that "the best thing for her was to give [Ivy] the peace of not having pain and suffering."
"The best option to protect our daughter from pain and suffering was to send her to heaven," Jill said. "When I prayed for healing -- sometimes that healing does not happen on this earth. Sometimes the way they get healed is to be free in heaven."
But the Hartles' doctors would not terminate the pregnancy.
Both the couple and their doctors were caught in the middle of South Carolina's changing abortion laws last summer.
On July 27, when Ivy's heart defect was first diagnosed, South Carolina law effectively banned abortion after about six weeks, and Jill was way beyond that timeframe.
Then on August 17, the state's Supreme Court temporarily blocked the six-week ban and the law reverted to abortion being "prohibited when probable post-fertilization of unborn child is twenty or more weeks."
The Hartles weren't due for their next ultrasound for another six days, but Jill was fast approaching the window in which abortion would be illegal under the 20-week law. She says she called her doctors at the Medical University of South Carolina to ask if she could come in earlier for the second ultrasound, knowing that she and Matt would want to terminate the pregnancy if the severity of Ivy's hypoplastic left heart syndrome diagnosis was confirmed.
But the doctors told her again that they would not terminate the pregnancy.
Woolwine, the MUSC spokesperson, said this was "still a very volatile legal time" since the South Carolina Senate was "actively pursuing new legislation."
"By the time the two day procedure could be scheduled, (Jill) was also at the end of the gestational window on the (20-week) law, and given the legal volatility, no one wanted her to be halfway through and the law could then change midstream," Woolwine wrote in an email to CNN.
Jill says she asked if there might be an exception in Ivy's case considering that South Carolina law allows for abortion if the fetus has an anomaly that "with or without the provision of life-preserving treatment, would be incompatible with sustaining life after birth."
Again, she was told no.
"The diagnosed fetal anomaly did not clearly meet a permitted exemption under the law," Woolwine wrote.
CNN reached out to 16 South Carolina state legislators who sponsored abortion restrictions to get their response to the Hartles' story, and three responded.
Grooms, the primary sponsor of the Senate six-week abortion ban expressed his commitment to "protecting the lives of children."
Sen. Katrina Frye Shealy, a co-sponsor of that bill, said there should be exceptions for "fatal fetal anomaly."
Sen. Brian Adams, another co-sponsor of that legislation, said he supports bills "which will allow those parents to make that tough decision when they have received a sad prognosis from the doctors about the pregnancy and their child has a fetal anomaly." Adams did not respond to a CNN email asking him to be more specific about how he defined "fetal anomaly."
US Sen. Lindsey Graham, a South Carolina Republican who introduced a bill in September that would ban abortions after 15 weeks, did not respond to emails from CNN asking him for comment.
Jill and Matt say given the penalties health care providers can face for violating South Carolina law -- heavy fines and prison time - they don't blame the doctors for refusing to terminate the pregnancy, or for declining to help them find a doctor who would.
"We were on our own to figure it out medically from that point on," Matt said.
Because of restrictive abortion laws in states like South Carolina, there's a backlog at clinics in nearby states that do allow abortion. That meant the Hartles had a lot of work in front of them.
"It was logistically a nightmare, trying to make this happen and figure out how to set this up," Matt remembers.
"My heart was broken -- to make those calls, even just saying the words out loud was so difficult," Jill added.
Family members who work in health care stepped in and made calls for them, locating a clinic in Washington, DC.
The clinic didn't have availability for another two weeks, so the Hartles were forced to wait, all while Jill was visibly pregnant.
"Every person you see, they pat the belly, 'how's the baby doing? How are you guys doing?'" Matt remembers.
Jill said it was particularly "torturous" at her hair salon, where Matt says she is "very close to her clients, and they're invested in her life."
"Every two hours I have a new person coming into my salon thinking everything is great, asking me how I'm doing, am I excited, do I have a day care picked out," Jill remembers.
While the Hartles were enduring this "excruciating" pain, they also had to figure out a way to pay for everything. They said their insurance doesn't cover out-of-state care, and the procedure cost $7,800. Add in airline tickets, hotel, other travel expenses, and the cost of bringing Ivy's remains back to South Carolina and they said the total cost was nearly $15,000 -- money they would not have had to have paid if they'd been able to get the procedure in South Carolina.
The couple, who had just bought a house, worried about the expenses. Only at the very last minute, just a few days before their trip to Washington, did they find out that several foundations were pitching in to pay for nearly all of the expenses.
The Hartles traveled to Washington on September 11, nearly three weeks after they'd made the decision to terminate the pregnancy. It was a three-day procedure to induce and deliver Ivy and afterward, her parents held her tiny body in a blanket with her name embroidered in green thread.
All of this took a terrible physical toll on Jill.
"I don't remember coming home because I was in so much physical pain from giving birth, and I could have avoided all of that by just being at home," Jill said. "It's all of those things that people aren't thinking about -- of women being on airplanes, having excruciating pain from giving birth, then having to get home."
It took a terrible psychological toll, too. Much of it was the pain of losing their child, but Matt said the state of South Carolina made it "so much worse" by forcing them to wait nearly three weeks, coordinate a complicated trip and leave their support system -- the loving embrace of family and friends.
"Those couple weeks, that travel, was just mentally brutal," Matt said. "It was going to be tough either way, but it didn't have to be like that. ... We were just put in such a tough position of not being able to be in (our) comfort zone during such a tough time."
He said the experience has "scarred" him.
"It makes me so angry that my wife was so devastated (and) I was so angry that I had to take her to a different city, somewhere uncomfortable to ask her to go for this procedure (and) so angry at how she was treated throughout this and how sad she was going through this and angry because I couldn't control any of it," he said. "I was unable to protect my family."
The Hartles say they've come away from this even stronger as a couple, but that the stress of the whole ordeal, including the part imposed on them by South Carolina legislators, might ruin less stable marriages.
That's one reason they're speaking out and fighting so hard.
"This was ten times worse than it should have been," Matt said.
"And we just don't want another family to have to experience the pain that we've had to experience," Jill added.
While the Hartles have always supported a woman's right to choose, they were never particularly vocal about it.
"I was pro-choice before, but I never thought I would have to stand up like this," said Jill, who doesn't belong to a political party and considers herself "very purple."
Since their ordeal, they've become activists. So far, they've created a short documentary about their experience, reached out to lawmakers, and spoken to the media in an effort to educate about fetal anomalies.
They say they want people to know that often families aren't aware of a severe birth defect until halfway through a pregnancy, and that's why the decision to terminate isn't made until that point.
"A lot of us have to wait that long to understand exactly what's going on to make the best decision for our child," Jill said.
They also want lawmakers in conservative areas to know that many Christians, like them, are opposed to strict abortion bans.
"If you come from a place of non-judgment and compassion and you show God's grace by loving another human no matter the decisions that they make, then that's true Christianity in my opinion," Jill said.
Stories from families like the Hartles are valuable tools in the fight for abortion rights in states like South Carolina, said Celinda Lake, a Democratic pollster and political strategist.
"It is literally the most persuasive scenario that we have in the tough cases," Lake said.
Molly Rivera, a spokesperson for Planned Parenthood South Atlantic, added that "people like Jill and other folks telling stories publicly can be so powerful."
The Hartles are working with Planned Parenthood to figure out their next steps for the Ivy Grace Project.
In the meantime, they're dreading the holidays.
"The 25th is Christmas, Jill's birthday is the 26th, and the due date was the 27th," Matt said.
Jill knows from talking to other parents who've lost a child that the first holidays bring on "a pain that is so indescribable."
"All I want to do is sleep and wake up, and it be January," she said.
But after January, she has a plan.
"My goal is to try to get in front of the state House this January when they reopen their session to explain my story," she said.
She said her inspiration will come from the women who've reached out to thank her and Matt for telling their story.
"If I can help a woman not feel alienated or feel alone, then that gives me courage to keep going forward," she said.