OVIEDO — By the squat rental house at the back of the four-acre plot, past the horse paddock but not quite to the barn, a sapling grows.
It’s obscured by the toys: a toddler-sized plastic car, a stomp rocket, all types of miniature sports equipment. It’s dwarfed by the American flag, weather-worn and a little too big for its place, but hung with pride by the door.
The sapling, a sweet bay magnolia, has branches that look more like twigs. It’s only ever sprouted one flower — last spring.
His parents, Danielle and Jason Tallafuss, planted it on Nov. 1, 2020, one day after their son’s expected due date.
To his parents, Nathaniel wasn’t a “pregnancy,” or a collection of cells. He wasn’t a fetus. He was a child. They had named him. Announced his coming arrival. Bought him a stuffed corduroy dinosaur similar to the stuffed fox they had gotten for their eldest son, Benjamin.
And then, after 22 weeks and 5 days of a pregnancy Danielle and Jason wanted more than anything, they made the decision to abort him.
This year, Republican state leaders have proposed a bill that would ban most abortions after 15 weeks of pregnancy.
They’ve proposed exceptions in cases in which the mother’s health could be jeopardized, or in cases involving a life-threatening medical condition for the child. For a state that has long granted its citizens privacy in matters of abortion, this is a revolutionary proposal that has been litigated for hours at legislative committees, at rallies and on the House floor.
But much of the debate has been couched in hypotheticals. What about this circumstance? What about women’s rights? What about the life inside a mother?
For Danielle and Jason, the conversation isn’t hypothetical. It’s a decision they made. And if the bill passes, it’s a decision that would be taken out of the hands of families like theirs.
The Tallafusses are planners. From the moment they talked about starting a family, they knew they either wanted zero kids or two. They both come from Catholic families. They had siblings. An only child was not an option.
In 2019, they unexpectedly became the adoptive parents of Benjamin after Jason’s younger sister determined she couldn’t care for her child.
The next year, they started trying for child number two. Nathaniel.
At the 20-week anatomy scan in June, the ultrasound technician kept using the word “perfect.” Danielle couldn’t look away from the screen. Jason captured the scene on video.
The technician pointed out his lips, his nostrils. His tiny feet.
Get insights into Florida politics
Subscribe to our free Buzz newsletter
You’re all signed up!
Want more of our free, weekly newsletters in your inbox? Let’s get started.Explore all your options
“That’s incredible! It’s like a little doll,” Jason cooed.
The technician had some trouble focusing the equipment on a side of Nathaniel’s heart, but that wasn’t overly concerning.
At this point in the pregnancy, Jason and Danielle knew their son was developed enough to hear, so Danielle continued her nightly ritual of singing to him while rocking Benjamin to sleep. She’s not religious, but she would always sing “Amazing Grace,” like her grandmother used to.
Four days later, they got a call from a midwife.
The soonest Danielle and Jason could book an appointment with a specialist was the next week. For eight excruciating days, they waited.
Doctors were concerned Nathaniel’s heart hadn’t developed properly, that perhaps he had something called hypoplastic left-heart syndrome.
Danielle and Jason traded journal articles as they planned Benjamin’s woodland critter-themed first birthday party. Danielle would click out of an open tab filled with medical jargon to peruse gift options on Amazon. The condition was fatal, they learned, without heavy intervention. Treatment consisted of at least three complex heart surgeries performed before the age of three. They bought Benjamin a book and some beach toys.
Because of the pandemic, Danielle had to go to the doctor’s office alone. Jason called in from the parking lot to hear the doctor confirm the diagnosis.
They had three options, the doctor said. They could carry Nathaniel to term, then let him die of natural causes. They could terminate. Or they could carry Nathaniel to term, and have specialists attempt to remake his heart with a trio of intense procedures that would keep his little body strapped to machines from his first moments out of the womb.
A second specialist, a pediatric cardiologist, walked Danielle and Jason through the first days of Nathaniel’s life under that third scenario. Cut off from Danielle’s circulatory system, which would no longer fill his blood with oxygen, he would need medical assistance to survive. His first surgery would come at just a few days old. Then he’d spend at least two weeks in a neonatal intensive care unit.
Nathaniel had a fair chance of surviving the initial round of surgeries if everything went well, they learned. But that process could come with lifelong complications.
Danielle asked the doctor whether the treatment process would be painful. She remembers the doctor averting her gaze.
Abortion is legal in Florida until the third trimester — about 24 weeks — but it’s not easy to find a provider who will perform an abortion near that stage. Nathaniel had grown so big, Danielle’s doctor told her she needed to book an appointment in the coming days.
Danielle’s doctors connected her with a provider two and a half hours away in West Palm Beach. Danielle would need a two-day operation, and the coming weekend was the Fourth of July. The clinic agreed to keep its doors open just for her.
By a stroke of luck, Danielle’s sister had driven from Pennsylvania for Benjamin’s birthday and could help with driving and child care.
Danielle booked a last-minute hotel and arranged to charge the $4,910 procedure to a credit card.
She asked Jason to stay behind. She wanted things to be as normal as possible for Benjamin, who would be without her for the first time.
Jason tried to focus his attention on Benjamin. But after his son’s bedtime, he had no one to talk to. He lay awake thinking about his wife.
In the clinic, medical staff got Danielle ready. During an ultrasound, the nurse offered Danielle a look at the screen, but she couldn’t bear it.
Danielle was awake for the first day’s procedure. A nurse held her hand while a doctor inserted a needle into her uterus, stopping Nathaniel’s heart.
Next, the doctor placed rods into the opening of Danielle’s cervix. Over the course of the next several hours, the rods would swell, creating an opening for the next stage.
Dazed and grief-stricken, Danielle retreated to her hotel room with her sister.
Before, she had felt her baby kicking. He wasn’t kicking anymore.
While battling what felt like the worst menstrual cramps of her life, Danielle eventually drifted off to a fitful sleep.
She remembers what came next only partially, because of the medication the clinic gave her for the pain. At 8 a.m., doctors removed her son’s body.
She had made a request: Could the doctors make some prints with Nathaniel’s feet? A mark on a piece of paper to prove he was there?
‘It is hard to understand’
The Florida Channel flooded into the couple’s living room this month as a panel of state senators debated the 15-week abortion bill. Danielle and Jason followed the familiar arguments alongside a reporter who hoped to capture their response to the hearing. The state’s march toward abortion restrictions seemed inevitable.
Speaker after speaker strode to a lectern to give their take. Not one had been through what Danielle and Jason experienced.
This year’s bill would allow abortions past 15 weeks if a “fatal fetal abnormality” is detected. That term is defined as a condition that would take a child’s life outside the womb even if doctors pursue treatment.
The bill’s sponsors say the exception is meant to give families flexibility. Many fetal anomalies aren’t discovered until the anatomy scan, which takes place after their proposed 15-week abortion deadline.
But the bill does not provide a list of conditions that constitute such an abnormality. Were a family to seek an abortion after 15 weeks, two different doctors would have to attest to the seriousness of the fetus’ condition.
The disease Nathaniel carried affects about one in every 3,800 babies birthed in the United States, according to the Centers for Disease Control and Prevention.
There’s no cure for hypoplastic left heart syndrome, but there is a treatment. In a series of three surgeries, doctors reconstruct the child’s heart so its working parts can assume the function of the parts lost to the disease.
Researchers have come a long way in recent decades in understanding the syndrome, said Paul Grossfeld, a pediatric cardiologist and a professor at the University of California San Diego’s school of medicine. This understanding is so new, it’s not clear how long a patient’s reconstructed heart will last before it gives out. But Grossfeld has patients in their 20s who were born with the disease. One of the kids he treated is a teenage athlete.
If the child gets the best possible care during that initial round of surgeries, they have close to a 90 percent chance of surviving into adulthood, Grossfeld said.
The surgeries are demanding and expensive — hundreds of thousands of dollars. But insurance often covers the cost, Grossfeld said. A team of pediatric cardiac critical care specialists ensures the process, however grueling, is as painless as possible.
Would Grossfeld recommend terminating a baby with the disease?
“I would be reluctant to do it for a baby where everything else medically looks good,” he said. But: “Just because that’s what I believe, that doesn’t mean that’s what the family should do.”
Jason and Danielle don’t regret their decision. After the procedure, Danielle found community in a Facebook group called Ending a Wanted Pregnancy. She has seen stories like hers, and she and Jason remain confident that they spared their child from trauma.
“You hear people say, ‘I’d do anything to take away their pain,’” Danielle said, talking about parents of children with terminal illnesses. “In this particular case, I had the opportunity to do that for my son. I made sure that he did not feel any of that pain.”
Even after insurance picked up its portion, the couple says their family was looking at tens of thousands of dollars in bills.
“We’d be bankrupt. We’d be medical-bill poor. We would never be able to pay it off,” Danielle said.
Though they considered themselves progressive before, they hadn’t been very active in politics. But since her abortion, Danielle has found her issue. She posts on social media when abortion bills come up in state legislatures. She’s told her story to the Orlando Sentinel. She’s mulling an appearance at a Planned Parenthood news conference in Tallahassee ahead of this week’s potential Senate vote on the 15-week bill.
If senators pass it, the measure heads to Gov. Ron DeSantis’ desk. If signed into law, the ban would take effect July 1.
During a lull in the conversation with a reporter, Jason’s attention turned back to Monday’s committee hearing. Another citizen came up to testify.
“I’m someone who was not able to have children,” the speaker said. “And I really find it difficult to understand why anyone would want to abort a baby that someone else could love and care for.”
”It is hard to understand,” Jason said softly, almost to himself.
Danielle and Jason began trying again. Almost immediately, they got to feel the terror and joy of another planned pregnancy.
Each doctor’s appointment and every scan came with an added layer of stress. Danielle slept with Nathaniel’s dinosaur every night. She couldn’t bring herself to sing to the new baby in her womb. When she does sing these days, it’s never “Amazing Grace.”
But now, across from the bedside table where Nathaniel’s dinosaur sits, is the crib where Alexander sleeps.
On a typical weekend, the family heads to a playground, or to the zoo. Jason and Danielle figure kids should be outdoors. Every once in a while, on a clear day, they can see a rocket take off, or come back to earth from just outside their front door. Benjamin loves that.
Jason and Danielle will never be completely at peace. Jason can’t remember saying goodbye to Nathaniel as his wife left for the clinic. Danielle finds her emotions harder to process, more jumbled in her mind.
Still, after all the pain and reckoning, the Tallafusses are a family. Alexander is a healthy nine-month-old with piercing blue eyes. He started crawling last week.
In their bedroom, a Mother’s Day gift lists the names of the three children. They keep a photo of Nathaniel’s ultrasound and his dinosaur on their bedside table. Outside, the imperfect sapling offers the occasional flower.
But Nathaniel’s footprints, etched onto a few square inches of a bereavement card, stay in a folder in their bedroom closet, out of sight.
• • •
Tampa Bay Times Florida Legislature coverage
Sign up for our newsletter: Get Capitol Buzz, a special bonus edition of The Buzz with Emily L. Mahoney, each Saturday while the Legislature is meeting.
Watch the Florida Legislature live: The Florida Channel, a public affairs programming service funded by the Legislature, livestreams coverage at thefloridachannel.org. Its video library also archives coverage for later viewing.
We’re working hard to bring you the latest news from the state’s legislative session. This effort takes a lot of resources to gather and update. If you haven’t already subscribed, please consider buying a print or digital subscription.