On Feb. 17, 2016, Kelsey Williams got some devastating news.
“I went in for my routine anatomy 20-week ultrasound with my second child – my husband and I have a 4-and-a-half year old – and nothing had been indicated as anything but typical up to that point in the pregnancy," she said.
Williams, now 30, said the ultrasound technician was quiet for a long time, then went to get the doctor. The physician told Williams her baby had severe clubbing of all four of his limbs and was unable to move.
She said it was due to an unexplained genetic anomaly, and that if carried to term, the child might never be able to swallow. Williams said she spent most of that day at Magee Women’s Hospital of UPMC shuffling from one specialist to another.
“It wasn't until I got home that afternoon that it sort of came over me in waves. When we came home, to the home that was supposed to be for the four of us then … it was a gut feeling,” she said. "Even though it was a hard decision, it was the right decision for our baby and for our family. We didn't want to bring that baby into this world to only know pain and suffering.”
Williams and her husband decided to terminate the pregnancy at 21 weeks and 6 days.
It’s a procedure that some Pennsylvania lawmakers think should be illegal.
“It is our duty to protect innocent lives,” said Rep. Kathy Rapp (R-65, Crawford, Forest, Warren), who sponsored the House version of the bill. “It is our duty to be the voice of the voiceless."
Rapp said the bill is based on the idea of viability, and that recent medical advances have made it possible for a fetus to survive outside the womb as early as 21 or 22 weeks. Indeed, a handful of children have survived after being born that early, but there is no consensus within the medical community regarding a hard cutoff for viability.
“We know that survival of premature babies above 23 weeks has increased in our region with medical advancements,” said Sheila Ramgopal, an OB/GYN in Pittsburgh who has performed abortions both before and after 20 weeks. “However, the majority of premature children that are born at these extreme gestational ages do not survive without significant deficits, including difficulties in sight, breathing, movement and even in cognitive function."
Ramgopal said one of the main problems with the 20-week abortion ban is that pregnant women often don’t find out about fetal anomalies until the 20-week anatomy scan. She said, before that, the fetus isn’t big enough to really see if it’s developing normally.
“We're looking at the brain, the spine, the lungs, the heart, everything. And so if SB 3 is actually passed, women who are finding out that their pregnancies are abnormal at 20 weeks will have no options to end the pregnancy, even if this was life threatening to the fetus or something that they did not choose to want to continue,” she said.
Karen Agatone lives outside Philadelphia, and like Williams, she said her pregnancy seemed perfectly normal at her 16-week ultrasound.
“Unfortunately, by the time we got to that 20-week exam, my daughter was immediately diagnosed with a very rare genetic mutation that's called thanatophoric dysplasia,” Agatone said. “In layman's terms, it's basically a lethal form of skeletal dysplasia, which is dwarfism.”
Agatone said her doctor told her that her daughter’s condition was incompatible with life, because her lungs would be too underdeveloped to ever breathe on her own.
“They basically explained to us that I could...continue carrying to term, which posed a fair amount of risk for me, because of where my placenta was actually placed and how her malformations were going to continue to grow within the womb,” she said. “But they said that I could continue to carry to term and she could potentially be stillborn at any point."
Agatone said she and her husband decided to terminate the pregnancy, and at 21 weeks, she had an abortion.
“Emotionally, it was devastating,” she said. “I pretty much just wanted to crawl into a hole and die … It was just the worst moment of my life.”
Agatone and Williams both argue that no one but the parents should have the right to decide if a pregnancy should be brought to term, especially in cases of severe genetic anomalies.
Rep. Rapp argued that there are stories on both sides of the issue, and that she’ll always be “on the side of life.”
“We hear personal stories (of people who have) been told by the doctor that 'Your child has an abnormality, your child's not going to live,'” Rapp said. “They have the child, and the child is perfectly fine.”
The bills would do more than outlaw abortions after 20 weeks. They both also ban what the medical community calls the dilation and evacuation method of abortion, or D&E. The bills call it “dismemberment abortion” and specifically references procedures that involve the use of clamps, grasping forceps, tongs, scissors or similar instruments.
Ramgopal said the bill includes language that abortion providers oppose, and that D&Es are typically required for abortions in the second trimester, after 13 weeks. Before that, doctors will opt for dilation and curettage, or D&C, which uses suction to remove the fetus.
Without the option of D&E, women having abortions between 14 and 20 weeks would have to undergo induction of labor.
In 2014, the most recent year for which data are available, 328 abortions were performed after 20 weeks gestation in Pennsylvania, just a little more than one percent of the 32,000 abortions performed that year.
Pennsylvania doesn’t collect data on why women elect to have abortions, but according to a 2004 nationwide survey by the pro-reproductive rights policy group the Guttmacher Institute, a combined 25 percent of women said they were concerned about the health of the fetus or their own health.
Pennsylvania Gov. Tom Wolf has said he would veto the bills should they make their way to his desk, but House Speaker Mike Turzai (R-Allegheny) said he’s not so sure.
“I think Gov. Wolf might rethink this when the bill is actually on his desk—I'm not convinced that he ultimately vetoes,” Turzai said. “I think he's going to think about it.”
If Wolf does veto, it’s not clear whether the House will have the votes it needs to override. The Senate was one vote shy of a veto-proof majority when it voted on its version earlier this month.
But proponents of the bills say, if vetoed, they will be introduced again in the future. If that happens under a Republican governor, the 20-week abortion ban could become commonwealth law.
“I think of women who could be getting their diagnosis right now,” said Kelsey Williams. “Their legislators are talking about them as if they're not real or voting against having their stories be heard. It's unthinkable.”
Williams said she thinks about having a second child one day, but that the experience of terminating a pregnancy for medical reasons has made her even more grateful for her daughter.
Agatone gave birth to her first child, a son, three-and-a-half months ago.
“I wouldn't have him in my arms if I had to carry to term an unviable pregnancy,” she said. “I think that politicians want to talk about … the right to life, but they don't really think about the cost. And I don't mean financial cost, I mean the emotional and physical cost on a woman and her family.”