Her son would have been born with half a heart. Now, a Florida abortion might not be legal

Her son would have been born with half a heart. Now, a Florida abortion might not be legal

Danielle Tallafuss, 35, poses for a portrait with a sonogram of her son Nathaniel and a corduroy dinosaur she bought for him in her bedroom on Monday, Feb. 21, 2022. Danielle and her husband decided to terminate her pregnancy at 22 weeks after learning that Nathaniel would have been born with hypoplastic left heart syndrome, an underdevelopment of the left side of the heart, to protect their child from the toll his condition would take on his life. “I carried you every second of your life and I will love you for every second of mine,” reads the frame. Danielle said she held onto the dinosaur when she had the abortion.

Danielle Tallafuss, 35, poses for a portrait with a sonogram of her son Nathaniel and a corduroy dinosaur she bought for him in her bedroom on Monday, Feb. 21, 2022. Danielle and her husband decided to terminate her pregnancy at 22 weeks after learning that Nathaniel would have been born with hypoplastic left heart syndrome, an underdevelopment of the left side of the heart, to protect their child from the toll his condition would take on his life. “I carried you every second of your life and I will love you for every second of mine,” reads the frame. Danielle said she held onto the dinosaur when she had the abortion.

Tampa Bay Times

Danielle and Jason Tallafuss ended their first pregnancy in July 2020, not because the Orlando-area couple didn’t want a child or because her pregnancy was unplanned. Rather, doctors had discovered a heart defect in the fetus during an ultrasound performed nearly 21 weeks into the pregnancy, a condition that often ends in death within the first two weeks of a newborn’s life.

The Tallafusses had three options. Danielle could carry the child to term and deliver the baby, a son, and then either allow him to die naturally or begin a series of complex surgeries that typically require a heart transplant. Or they could choose to terminate the pregnancy, though only two clinics in Florida were willing to perform an abortion at that stage and both were about a three-hour drive away in Palm Beach County, Danielle said.

“If I was going to get an abortion, we had to make the decision in less than 24 hours,” Tallafuss said she remembers thinking at the time. “We had to make all the arrangements, all the logistics.”

At the time, Florida law allowed abortions until the 24th week of pregnancy, leaving the Tallafusses only a little time to find a provider who would terminate the pregnancy. They found one and aborted the fetus.

As of Friday, Danielle may not have had that option.

On July 1, a new Florida law prohibiting abortions after 15 weeks took effect, cutting short by nine critical weeks in a pregnancy the time that parents could learn of a potentially catastrophic fetal anomaly, and then make the difficult decision about whether to continue or terminate the pregnancy.

On Thursday, Leon County Circuit Judge John Cooper said he will temporarily block the ban, stating the new law violates the Florida Constitution’s privacy provision. Gov. DeSantis has said the state would appeal the ruling; the case likely will be decided by the seven justices of the Florida Supreme Court, all of whom have been appointed by a Republican governor.

READ MORE: For Florida women seeking an abortion, the rules are muddy

Tests to determine fetal mutations often not done before 15 weeks

Many tests, including amniocentesis or anomaly scans, typically are not performed before 15 weeks of a pregnancy, as they can harm the fetus. Some are not administered for weeks later, as the results would be inconclusive if they were performed earlier.

The new law may put physicians in an ethical and legal bind over what to say to their patients about their best course of action.

“When you restrict procedures, you’re in restricting healthcare and you’re creating scenarios where doctors are afraid to act because they don’t know if what they’re doing is legal or not. And that takes away the ability to care for your patient […] the non-medical political and social considerations interfere with your private doctor-patient relationship,” said Dr. Frank Anderson, a board-certified obstetrician/gynecologist and professor and chair of the humanities, health and society department at Florida International University.

In the Tallafusses’ case, Danielle, then 33, had showed up for her standard 20-week ultrasound, sometimes called an anatomy or anomaly scan because it’s performed at a gestational stage when doctors can check the development of organs and body parts and detect certain congenital defects.

‘This law is targeting people exactly like me’

Danielle said she had no concerns earlier in her pregnancy, and that she had undergone all of the recommended tests, including an amniocentesis, to detect the child’s gender and other markers, including the potential for Down syndrome and other chromosomal abnormalities.

But the ultrasound detected hypoplastic left heart syndrome in the fetus, in which the left side of the heart is critically undeveloped and can’t pump blood to the rest of the body.

With Florida’s new law banning abortions after 15 weeks, Tallafuss said, parents may not discover birth defects or other fetal anomalies until it’s too late to terminate a pregnancy — forcing them to travel out of Florida to seek an abortion or resort to underground clinics and risk their health and safety.

“This law is targeting people exactly like me,” she said. “This is my lived experience, and I will say that we were so steadfast in our decision to terminate that had it not been available in Florida we would have found the means to travel outside of the state to do it.”

Keeping his memory alive

Though the Tallafusses chose to terminate the pregnancy, Danielle said, they have not let go of the memory of the child who would have been born if he had not this serious medical condition.

“What’s important to me is my husband and I wanted our baby,” said Danielle, now 35. “He has a name. We say his name as often as we can, and that’ s Nathaniel. We still remember him and celebrate him, and there’s not a single day that goes by that we don’t think about him.”

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The footprints of Nathaniel Tallafuss Courtesy Danielle Tallafuss

Today, Danielle and Jason have two sons — a 3-year-old, Benjamin, whom they adopted, and a 1-year-old, Alexander, who was born from Danielle’s second pregnancy.

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Jason and Danielle Tallafuss with their two children, from left, 1-year-old Alexander and 3-year-old Benjamin. In July 2020, the Tallafusses chose to have an abortion after they learned their son would have been born with a condition where the left part of his heart had not developed, most likely leading to his death shortly after he was born or complex heart surgeries. Courtesy of Danielle Tallafuss

Across the United States, countless expecting parents have found themselves in the same difficult position as Danielle and Jason did two years ago. But this time, everything is roiled.

The Supreme Court’s landmark decision on June 24 to overturn Roe v. Wade created chaos, with seven states immediately banning abortion with more expected to follow, while seven other states have expanded their laws protecting abortions. The decision, which rescinded a nearly 50-year-old Constitutional right to end a pregnancy, now leaves the legality of abortion up to the states.

Florida’s new abortion law

Florida House Bill 5, which went into effect on Friday, prohibits physicians from performing abortions when the fetus is 15 weeks or older. There are three key amendments of the law:

Most abortions will not be allowed after 15 weeks. Previously, abortions were allowed up until 24 weeks under Florida law.

The age of the fetus will be calculated from the first day of the woman’s last menstrual cycle, rather than from fertilization, as previously defined. This further limits the time to seek an abortion.

A new exception will allow abortions if the fetus has not reached viability and has a fatal abnormality that would result in death immediately or soon after birth.

As before, abortions would be allowed in the new law to save the pregnant woman’s life or prevent substantial and irreversible damage to major bodily functions. But the law does not have any exceptions for victims of rape or incest.

The law notably does not provide exceptions for babies who will be born with severe birth defects. This “essentially forces women to carry a pregnancy to term even after they’ve found out that […] the fetus will have a short and potentially very painful life,” says Dr. Sarah Stumbar, associate professor of family medicine at Florida International University.

Pregnancy complications collide with new law

The 15-week deadline poses several dilemmas for doctors who deliver babies and genetic counselors who advise pregnant women and their families. This is particularly the case when parents learn the child they expect to deliver carries a chromosomal abnormality that results in a severe birth defect like Down syndrome, Edwards syndrome or spina bifida.

Down syndrome leads to physical growth delays and stunted intellectual development. Edwards syndrome causes structural heart defects, intellectual difficulties, and abnormal brain development. Spina bifida may result in paralysis, scoliosis and meningitis.

There are several factors that can lead to these birth defects, including chronic high blood pressure and diabetes in the mother and an advanced maternal age of 35 or older, says Stumbar. With women increasingly having children at older ages, these risks are intensified.

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Informational pamphlets in the hallway at the Planned Parenthood Center on Friday, July 1, 2022, in Golden Glades. Alie Skowronski askowronski@miamiherald.com

Older pregnant women and risks of fetal abnormalities

The median age at which mothers gave birth went from 27 in 1990 to 30 in 2019, according to a recent US Census Bureau report. And there were significant increases in mothers who gave birth over the age of 35: a 67% increase in pregnant women ages 35-39 and a 132% increase in pregnant women ages 40-44 since 1990, the Census Bureau reports.

The risk of birth defects, particularly those associated with chromosomal abnormalities such as Down syndrome, is much greater for older pregnant women: The chance of delivering a baby with Down syndrome for a 25-year old woman is 1 in 1,250. For 40-year old woman? That changes to 1 in 100.

For pregnant women, especially those considered high risk, an amniocentesis is performed to detect birth defects. During an amnio, physicians insert a needle into the pregnant woman’s abdomen and extract a small amount of amniotic fluid. This fluid surrounds the fetus during pregnancy, serving as a cushion and facilitating the critical exchange of nutrients between mother and fetus. The amniotic fluid is then taken to the lab and analyzed.

Amnios not done until 15-20 weeks

Because there must be sufficient levels of amniotic fluid before an amniocentesis is administered, an amnio is normally performed between 15-20 weeks of pregnancy. From there, it often takes two weeks to get results.

With Florida’s new law, it would be too late for a pregnant woman who learns her fetus is carrying a severe birth defect to have an abortion.

Early amniocentesis is not medically recommended as the uterus is too small and the tissues are too impenetrable, says Anderson, and it comes with an increased risk of miscarriage, due to rupturing the bag of fluid around the baby, and pregnancy complications such as club foot.

“I believe very firmly that abortion is a very safe, very common procedure, and I think it would be very hard for these politicians to be making those decisions if they have never sat in an exam room with a woman who was desperate for abortion care,” says Stumbar.

She credits an early experience in college, while she was shadowing a physician in the early 2000s at a clinic in New York City with a Cambodian-speaking patient seeking an abortion, as one of the reasons she went to medical school.

“I spent like four hours with the doctor, with an interpreter, walking her through this procedure in a clinic and at the end, she just thanked us and was crying. She was so grateful to not have this burden of a pregnancy that she couldn’t afford anymore. And for me, that was like this physician had given this woman her life back.

“It’s very difficult to imagine how someone could think that this is anything but healthcare and anything but pro-life if they had ever really sat face to face with people making this decision.”

Anderson isn’t sure how doctors will respond to Florida’s new abortion law. If patients get prenatal care early enough (and many do not have the resources or information to do this), they can have first trimester screening, cell-free DNA screening, or CVS tests done before the 15-week deadline. However, even in these cases, the physician and patient may be forced to act on less accurate information, he notes.

Added Nevena Krstic, a licensed certified genetic counselor at the University of South Florida: “The timing limitations and looming efforts to criminalize providers and/or patients go directly against the professional and ethical duty that healthcare providers have toward their patients. The fear and uncertainty will prevent providers from being able to provide all the necessary information to the patients, impeding their ability to make autonomous choices.”

Legal uncertainties

The legal implications of the Supreme Court’s Roe v. Wade decision are still uncertain, according to Allan Rosenbaum, a distinguished university professor of public policy and administration at FIU.

Although it’s highly unlikely that there will be limitations that prevent women from crossing state boundaries to have an abortion, he does expect issues to arise surrounding advertising of medical services for abortions.

“I think there is no question that various state legislatures, most likely Florida’s as well, will try to limit cross- border advertising and cross-border commercial activities,” he says, adding that he’s unsure how the courts will respond to these efforts to limit free speech and interstate commerce.

There are a plethora of unknowns about how new laws may impact physicians and patients, legal experts say: How much freedom will doctors be given to advise patients about how to get an abortion? Will Uber drivers who take patients to the airport to catch a flight to New York for an abortion be termed co-conspirators? Will companies like Target, Disney, and Netflix, which have taken steps to provide abortion travel coverage for employees, be at risk legally?

Inequalities expected to deepen

If Florida’s new law is upheld by the courts, many women would be forced to travel to states where abortion is legal after 15 weeks. The costs of such a travel, from flights to hotels to the abortion service (many insurance companies do not cover abortions) can reach a few thousand dollars, estimates Stumbar.

That’s a price many cannot afford.

“The economic repercussions are vast and rippling, particularly for people who are not privileged to be in salaried jobs and have people who can take care of their kids,” she said.

For those who cannot afford to travel out of the state for abortion care, Stumbar says there are national and local abortion funds that can help defray these costs, although “many of those are currently trying to figure out what the laws are where they’re located and how they need to navigate those restrictions to make sure that they’re able to operate in the future.”

And babies born with birth defects and genetic conditions often need lifelong care. Given the financial burdens this puts on families, especially lower-income ones, this will further promote inequity in the health care system, doctors say.

Anderson worries Florida’s new abortion law may lead to “people taking matters into their own hands,” getting unsafe procedures done by unqualified providers. This can lead to complex complications including damaged organs, hemorrhage, severe infection and even death.

Concluded Anderson: “I wish that these healthcare decisions could be made by the doctor and the patient without worrying about this third element of decision making that could lead to severe, unintended consequences.”

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Danielle Tallafuss, 35, left, and her husband Jason Tallafuss, 42, right, watch a Senate Appropriations Committee hearing in the living room of their Oveido home on Monday, Feb. 21, 2022. Sen. Kelli Stargel, R-Lakeland, who is on the screen, introduced bill SB 146, which would ban most abortions in the state after 15 weeks of pregnancy. Danielle and her husband decided to terminate her first pregnancy at 22 weeks upon learning that Nathaniel would have been born with hypoplastic left heart syndrome, an underdevelopment of the left side of the heart, to protect their child from the toll his condition would take on his life. Ivy Ceballo Times

Anuraag Bukkuri is a 2022 AAAS Mass Media Fellow at the Miami Herald. He is a PhD Candidate in integrated mathematical oncology at USF-Moffitt Cancer Center and uses mathematics to glean insight into problems in medicine and biology.

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