Her Baby Has a Deadly Diagnosis. Her Florida Doctors Refused an Abortion.

The Washington Post / Frances Stead Sellers

LAKELAND, Fla. – Deborah Dorbert is devoting the final days before her baby’s birth to planning the details of the infant’s death.

She and her husband will swaddle the newborn in a warm blanket, show their love and weep hello even as they say goodbye. They have decided to have the fragile body cremated and are looking into ways of memorializing their second-born child.

“We want something permanent,” Deborah said. Perhaps a glass figurine infused with ashes. Or an ornament bearing the imprint of a tiny finger. “Not an urn,” she said, cracking one of the rare smiles that break through her relentless tears. “We have a 4-year-old. Things happen.”

Nobody expected things to happen the way they did when halfway through their planned and seemingly healthy pregnancy, a routine ultrasound revealed the fetus had devastating abnormalities, pitching the dazed couple into the uncharted landscape of Florida’s new abortion law.

Deborah and Lee Dorbert say the most painful decision of their lives was not honored by the physicians they trust. Even though medical experts expect their baby to survive only 20 minutes to a couple of hours, the Dorberts say their doctors told them that because of the new legislation, they could not terminate the pregnancy.

“That’s what we wanted,” Deborah said. “The doctors already told me, no matter what, at 24 weeks or full term, the outcome for the baby is going to be the same.”

Florida’s H.B. 5 – Reducing Fetal and Infant Mortality – went into effect last July, soon after the U.S. Supreme Court overturned a half-century constitutional right to abortion.

The new law bans abortion after 15 weeks with a couple of exceptions, including one that permits a later termination if “two physicians certify in writing that, in reasonable medical judgment, the fetus has a fatal fetal abnormality” and has not reached viability.

It is not clear how the Dorberts’ doctors applied the law in this situation. Their baby has a condition long considered lethal that is now the subject of clinical trials to assess a potential treatment.

Neither Dorbert’s obstetrician nor the maternal fetal medicine specialist she consulted responded to multiple requests for comment.

A spokesman for Lakeland Regional Health, the hospital system the doctors are affiliated with, declined to discuss Dorbert’s case or how it is interpreting the new law. In an emailed statement, Tim Boynton, the spokesman, said, “Lakeland Regional Health complies with all laws in the state of Florida.”

The combination of a narrow exception to the law and harsh penalties for violating it terrifies physicians, according to Autumn Katz, interim director of litigation at the Center for Reproductive Rights, who has been tracking the implementation of abortion bans across the country.

Florida physicians who violate the new law face penalties including the possibility of losing their licenses, steep fines and up to five years in prison. As a result, Katz said, they “are likely to err on the side of questioning whether the conditions are fully met.”

***

The Dorberts’ hopes of having a second child came closer to reality last August when Deborah, 33, discovered she was pregnant.

“Everything was great,” Deborah said, recalling how she exercised regularly, ate well and watched in excitement as her pregnancy blossomed. A scan at 11 weeks, 6 days shows a recumbent fetus, buoyed in her womb.

At a mid-November appointment with her obstetrician, Deborah listened to the whoosh whoosh of her baby’s heartbeat and scheduled her next ultrasound for the following week – the anatomy scan that checks the development of fetal organs.

The day before Thanksgiving, Deborah drove with her son to the strip of medical offices across from the hospital where Kaiden had been born four years earlier and parked outside the low-slung, ocher Women’s Care building.

She was ready to introduce Kaiden to his younger sibling.

Deborah pulled up her T-shirt and folded down her yoga pants, baring her skin for a daub of warm gel. The technician slid her wand across Deborah’s swelling abdomen, calling out the baby’s features so that Kaiden could follow along on the black-and-white screen: There’s the baby’s head. There are the hands.

Then her expression changed. The technician excused herself and left the room. When she returned with the obstetrician, Deborah braced herself.

More pictures. More worried frowns. And then a wrenching explanation.

The baby was no longer buoyed in ample amniotic fluid, Deborah’s doctor gently told her. The kidneys were not developing properly, failing to produce the liquid that protects the fetus and promotes the development of vital organs. She didn’t think the baby would survive without a transplant, and she urged Deborah to follow up quickly with a specialist in maternal fetal medicine.

Deborah left carrying the scan stamped with the fetus’s gestational age – 23 weeks, 0 days. The ultrasound report lists a range of abnormalities, not only of the kidneys but also of the heart and stomach consistent with the diagnosis of “oligohydramnios,” or lack of amniotic fluid.

Deborah called Lee away from his new job as an noninjury adjuster for an insurance agency and met him at a park by one of the many lakes that dot Polk County. They cried and walked and wondered whether there could be some simple explanation. Perhaps Deborah’s water had broken prematurely.

Deborah was admitted later that day to Lakeland Regional Hospital for tests, including another ultrasound that showed the fetus had no kidneys.

On the Wednesday after Thanksgiving, Deborah had an appointment with a maternal fetal medicine specialist. A third ultrasound, now at 24 weeks gestation, confirmed the earlier findings, Deborah said, and the specialist told them that the condition was incompatible with life. This doctor also gave the diagnosis its common name: Potter syndrome.

He told them that some parents choose to continue to full term; others terminate the pregnancy through surgery or by inducing preterm labor, she recalled. He said he would begin contacting health-system administrators about the new law, and stepped out of the room to give the couple privacy to mull over their options.

Before they left, Deborah and Lee decided they would like to terminate the pregnancy as soon as they could. She recalls the doctor saying the termination, which would be performed by her obstetrician, might be possible between 28 and 32 weeks.

***

Ever since the condition was identified more than 75 years ago by Edith Potter, a pioneering perinatal specialist, Potter syndrome has been considered a doubly lethal diagnosis. Without working kidneys, newborns are unable to rid their bodies of deadly toxins and go into renal failure. Without amniotic fluid in the womb, they are born unable to breathe.

“The real problem is underdeveloped lungs,” said Jena L. Miller, a specialist in fetal intervention at Johns Hopkins Hospital and principal investigator in the clinical trial investigating treatment of the syndrome. In healthy fetuses, she said, the spongelike organs expand in the womb, practicing breathing by inhaling amniotic fluid.

Babies with Potter syndrome often die before they are born when their umbilical cords become trapped between their bodies and the wall of their mother’s uterus. Those that survive the birth process typically suffocate within minutes or a matter of hours.

The choices are stark for parents whose babies’ severe defects are typically detected on anatomy scans midway through pregnancy. Apart from the clinical trial, which closed enrollment last July before Deborah discovered she was pregnant, and a few physicians who are experimenting with replacing amniotic fluid, there are no treatment options.

The couple said they decided on preterm induction as soon as possible out of concern for Deborah’s physical and mental health, worries about the baby suffering, and their desire to begin the grieving process.

Already, routine conversations were becoming difficult. “It’s ‘Yes, I’m pregnant,’ but ‘No’ at the same time,” Deborah says.

A chance encounter in the grocery store aisle with her former obstetrician prompted a delighted exclamation about Deborah’s changing shape – “You’re having a second!” – followed by a distressing explanation of what was going on.

She decided against attending Lee’s office Christmas party for fear of the questions that might come up.

As her body changes, even family outings on their favorite hiking trails bring the threat of well-meaning wishes to Kaiden: “You gonna be a big brother, Buddy?”

The 4-year-old, who hands Deborah tissues to stanch her tears, believes he will soon have a younger sibling and that it will be a sister.

“We haven’t taken that leap to tell him,” Deborah said.

For much of the time, her pregnancy is disconcertingly normal, though she has stopped going in for regular checkups to escape the company of expectant mothers. Deborah can feel the baby pushing against her ribs and hips and deep into her pelvis, causing pain that she believes comes from the lack of fluid cushioning the baby. On occasion she pushes back, mother and child adjusting to the give-and-take of life together.

In December, Deborah says, she texted the coordinator at the maternal fetal medicine office regularly, hoping to schedule an induction by Christmas. The response stunned her: After consulting health-system administrators about the law, the specialist concluded Deborah would have to wait until close to full term, around 37 weeks gestation, she recalled the coordinator telling her.

The doctor made his determination after having “legal/administration look at the new law and the way it’s written,” the coordinator reiterated to Deborah in a recent text message she shared with The Post. “It’s horribly written,” the text continued.

For Deborah, that meant resigning herself to a two-month wait, during which her anxiety and depression built.

***

Deborah and Lee drove across the state to join Deborah’s Catholic family at her parents’ house in Melbourne on Christmas Eve – a multigenerational gathering with a carnival set up outside for the grandchildren. It was a distraction, Deborah recalls, from her private pain.

But Deborah’s parents, Peter and Cindy Rogell, say they worry about her, the fourth of seven children. Their son’s wife is also expecting a baby around Deborah’s due date: twin pregnancies – their 16th and 17th grandchildren – that prompted parallel excitement at the outset and are now progressing along divergent paths.

Peter Rogell has pondered the meaning of the life his daughter is carrying, forcing him to confront his own concerns about abortion. He has felt the baby move.

“I asked her, ‘Would you mind if I put my hand on your stomach?’ I wanted to feel the life,” Rogell said. “It’s hard to comprehend there won’t be life.”

Seeing his daughter’s ongoing suffering, he has come to share Deborah and Lee’s mounting frustration with the long wait, weighing it against his prayers that, somehow, the doctors messed up and that the baby will survive.

“I believe in life and all that. But [when] two doctors, three doctors say this is this, they should be able to terminate early to save the mental life of the mother,” Rogell said. “I’m sure Debbie’s going to be changed.”

During an appointment in early January, Deborah said her obstetrician, after consulting other experts, told her that she had also concluded that termination at this stage would not be possible. The doctor pointed out that states like California and New York have fewer restrictions.

The Dorberts say they wondered briefly about traveling, but they have left Florida only a handful of times since Kaiden was born and were daunted by the costs. Deborah had stopped working at Publix after Kaiden was born, and Lee, 35, is only recently reemployed after losing his job during the pandemic. They felt uncertain about finding new doctors to terminate an already traumatic pregnancy. And they worry about potential legal repercussions.

Deborah didn’t pay much attention to the laws when they were enacted, never believing she would want an abortion. But that has changed.

“It makes me angry, for politicians to decide what’s best for my health,” she said. “We would do anything to have this baby.”

They have resolved to wait in Lakeland, still confused by the law that is determining her care.

“We have never really understood,” Lee Dorbert said. “We were told there was an exception,” he said, recalling conversations with their doctors. “Obviously not enough of an exception in some cases.”

The Florida law does not clearly explain how viability should be interpreted.

Kelli Stargel, a former Republican state senator and longtime Lakeland resident who was one of the bill’s key sponsors, said the law was written to permit abortions when there is no chance of survival.

“If the baby has a fatal fetal abnormality and cannot survive outside the womb, it can be terminated at any point in the pregnancy,” Stargel said. “It was my intention not to require a woman to maintain a pregnancy when doctors agree the baby is not viable.”

But, she said, if medical professionals and lawyers disagree, that will be decided in the court system.

David Berger, Deborah’s primary-care physician who learned of her diagnosis at her annual telehealth checkup in January, said the risk to Deborah increases as the pregnancy continues, with no additional benefit to the fetus.

***

Despite the repeat ultrasounds that told them so much about the fetal abnormalities, the Dorberts have never learned the baby’s sex. Each time, the baby’s legs were crossed or the umbilical cord was in the way.

But they have already picked out names: Milo if it is another boy, and Malia for a girl – “What Daddy wanted,” Deborah says.

For now, the Dorberts’ second child is Baby M.

In early January, the parents met by Zoom with staff members from Nemours Children’s Health, which offers pediatric specialty care at Lakeland Regional Health, to discuss Baby M’s short life. The couple listened to the options, grateful to be given some choice again. They have decided to provide comfort, or palliative, care rather than trying to prolong Baby M’s life on a ventilator or with other extreme interventions.

“That’s been very important to us, understanding that we do have that control back at least in some of these decisions,” Lee said.

They have invited Deborah’s parents to join them at the hospital to meet Baby M, just as they met Kaiden when he was born. And they know Baby M may be deformed by having been compressed inside Deborah’s uterus for several months, with a flattened face, widespread eyes, club feet and contracted arms and legs.

Peter Rogell keeps praying that Baby M may be a Miracle Baby.

He’s read about at least one – the child of a congresswoman who survived despite being diagnosed with Potter syndrome after a physician replaced the missing amniotic fluid with injections of saline solution.

The story raised hopes for families in similar predicaments and paved the way for the clinical trial, now underway in nine specialized centers around the country. The trial was no longer open to new participants by the time Deborah received the diagnosis.

This month, researchers released initial results for 18 babies, who, like Deborah’s, were missing both their kidneys. With their amniotic fluid replenished through regular infusions, their lungs were able to develop enough for most to survive at least two weeks after birth.

The promising results represent only the first step for extremely vulnerable newborns who still need kidney transplants and other high-tech care, said Miller, the study’s principal investigator. Since then, many have suffered serious complications, including strokes, or died, she said.

“What is super challenging about the trial is that it opens a Pandora’s box for many issues,” she said. “Will this still be a lethal disease?”

***

Florida’s 15-week ban is currently being appealed before the state Supreme Court. Meanwhile, state legislators have indicated they may tighten restrictions, and Gov. Ron DeSantis (R) suggested he would sign a six-week ban.

“We’re for pro-life,” the Republican governor said at a recent Tallahassee gathering. “I urge the legislature to work, to produce good stuff, and we will sign.”

The high-tech clinical advances and high-stakes legal challenges may change outcomes in the future for parents whose fetuses are diagnosed with Potter syndrome. But not for the Dorberts, who are navigating the remaining days with caution, aware that even the most mundane event can transform into an ordeal.

Recently, during a visit from Deborah’s parents, the couples ventured out for dinner. At the barbecue restaurant, Rogell spotted two other heavily pregnant women and saw his daughter looking over at them.

He wondered what Deborah was thinking, but couldn’t bring himself to ask.