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.”
Deborah Dorbert, right, and her husband, Lee, have dinner with their son, Kaiden, at their home in Lakeland, Fla. (Thomas Simonetti for The Washington Post)
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.
How Florida’s abortion ban is leaving one family in agony
4:53
Despite their baby’s fatal fetal abnormality, the Dorbert family was denied the possibility of terminating their pregnancy early. (Video: Drea Cornejo/The Washington Post)
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.
Deborah Dorbert, in pain from her complicated pregnancy, does yoga on the back patio of her home in Lakeland, Fla. (Thomas Simonetti for The Washington Post)
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.
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.”
Deborah Dorbert, right, and her husband, Lee, have dinner with their son, Kaiden, at their home in Lakeland, Fla. (Thomas Simonetti for The Washington Post)
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.
How Florida’s abortion ban is leaving one family in agony
4:53
Despite their baby’s fatal fetal abnormality, the Dorbert family was denied the possibility of terminating their pregnancy early. (Video: Drea Cornejo/The Washington Post)
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.
Deborah Dorbert, in pain from her complicated pregnancy, does yoga on the back patio of her home in Lakeland, Fla. (Thomas Simonetti for The Washington Post)
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.
