A Florida woman, unable to get an abortion in her state, carried to term a baby who had no kidneys.
Deborah Dorbert’s son Milo died in her arms on March 3, shortly after he was born, just as her doctors had predicted he would.
“He gasped for air a couple of times when I held him,” said Dorbert, 33. “I watched my child take his first breath, and I held him as he took his last one.”
She said her pregnancy was proceeding normally until November, when, at 24 weeks, an ultrasound showed that the fetus did not have kidneys and that she had hardly any amniotic fluid. Not only was the baby sure to die, her doctors told her, but the pregnancy put her at especially high risk of preeclampsia, a potentially deadly complication.
Her doctors told her it was too late to terminate the pregnancy in Florida, which bans nearly all abortions after 15 weeks. The only options were to go out of state to get an abortion or to carry the baby to full term, and Dorbert and her husband didn’t have the money to travel.
What followed was an agonizing 13 weeks of carrying a baby she knew would die and worrying about her own health. It left Dorbert with severe anxiety and depression for the first time in her life.
Florida law allows abortions after 15 weeks if two doctors confirm the diagnosis of a fatal fetal abnormality in writing, but doctors in Florida and states with similar laws have been hesitant to terminate such pregnancies for fear someone will question whether the abnormality was truly fatal. The penalties for violating the law are severe: Doctors can go to prison and face heavy fines and legal fees.View this interactive content on CNN.com
Grall did not respond. Persons-Mulicka sent a statement.
“The intent of the law is quite clear. We are providing mothers with the resources they need to raise healthy children, empowering doctors to help their patients make informed decisions, and shifting the conversation to valuing life,” she wrote.
Last month, Florida Gov. Ron DeSantis signed into law an even more restrictive measure that would ban most abortions in the state after six weeks, with an exception for fatal fetal abnormalities. The law won’t go into effect until the state Supreme Court overturns its precedent on abortion or tosses out a case challenging state abortion restrictions.
Doctors scramble to figure out abortion laws
Deborah met Lee in 2014 while they were working at Publix in Lakeland, Florida, where she was a clerk and he was a team leader in the grocery department. They married three years later, and their son Kaiden was born a year after that.
Last year, the couple was thrilled when they found out they were going to have a second child. On the day before Thanksgiving, when she was 23 weeks pregnant, Dorbert brought Kaiden to an ultrasound appointment.
The 4-year-old was enthralled, looking at the screen and following along with the ultrasound technician as she pointed out the baby’s features.
“He’d go, ‘yeah, there’s the eye’ or ‘there’s the hand,’ ” Dorbert remembered. “He was excited that he could see the baby on the monitor.”
But abruptly, the technician stopped pointing at the screen and left the room to get the obstetrician.
Her obstetrician’s ultrasound report that day shows a grim diagnosis: There was no right kidney, and it was unclear whether there was a left kidney. In addition, the baby had too little amniotic fluid, and the heart was swollen. The obstetrician referred Dorbert to a high-risk pregnancy expert.
Because of the holiday, it took a week before the Dorberts could get in to see the specialist. They said a more detailed ultrasound at that appointment showed that the baby had no kidneys at all and that the lungs were under-developed.
The condition is called Potter syndrome, and the specialist said it was ” ‘incompatible with life,’ ” Deborah remembers. She says the doctor told her the baby would be stillborn or would die within minutes, or at most hours, after birth.
In this situation, doctors in states that allow abortions routinely give parents two options, according to Dr. Erika Werner, chair of the Department of Obstetrics and Gynecology at Tufts Medical Center and a spokesperson for the Society for Maternal-Fetal Medicine.
One is to induce birth and, if the baby is born alive, offer comfort care until death. The other is to carry the baby to full term.
The Dorberts told the specialist that they wanted to induce birth, terminating the pregnancy, to spare the baby, themselves and their older son from suffering. They said the doctor agreed that this was a sound decision.
Dorbert says the doctor told her that in all the cases he’d seen, “that was always the outcome – someone’s baby went stillborn – and the ones that did deliver, the babies pass shortly after birth.”
But the doctor said he would need to check with his administration because of the Florida law that had gone into effect a few months before, banning most abortions after 15 weeks.
The law makes an exception if “two physicians certify in writing that, in reasonable medical judgment, the fetus has a fatal fetal abnormality,” which the law defines as “a terminal condition that, in reasonable medical judgment, regardless of the provision of life-saving medical treatment, is incompatible with life outside the womb and will result in death upon birth or imminently thereafter.”
About a month passed without a decision. Finally, Dorbert’s obstetrician informed her that she wouldn’t terminate the pregnancy. By this point, Dorbert was 27 weeks along.
Dr. Stephanie Ros, a high-risk pregnancy expert in Tampa and a spokesperson for the Society for Maternal-Fetal Medicine, said she’s not surprised that the doctor was unwilling to do the termination, considering that the law does not spell out exactly what would be considered a “terminal condition.”
“With health care, there are very few black-and-whites. There are so many things that are a little bit nuanced,” she said. “The moment the law came out, I think everyone was scrambling to try to figure out what exactly that language intended to convey.”
If a doctor is convicted of running afoul of the law, the penalties are severe: up to five years in prison and $5,000 in fines, not to mention steep legal fees.
Ros, an associate professor at the University of South Florida, said that after the law was passed, she and colleagues at Florida academic medical centers wrote a list of conditions they considered fatal fetal abnormalities. Renal agenesis – the absence of kidneys – was on the list.
For that reason, she said, she would feel comfortable terminating a pregnancy with a fetus with this condition, but she “absolutely understands” why doctors who aren’t at academic medical centers, such as Dorbert’s obstetrician, would refuse.
“It’s tricky because of how this law was written in the first place,” she said.
A ‘medical marvel’
In Dorbert’s situation, part of that trickiness has to do with the pregnancy 10 years ago of a woman she’s never met.
In 2012, Jaime Herrera Beutler, then a Republican US congresswoman from Washington state, found out she was pregnant with a baby who, like Dorbert’s, had Potter syndrome. The condition affects more than just the kidneys. Functioning kidneys produce amniotic fluid, which a fetus “breathes” into their lungs, and if there’s not enough of it, the lungs don’t develop properly.
In the womb, the baby can live with underdeveloped lungs because the placenta provides oxygen. But after birth, the baby is on their own.
During her pregnancy, Herrera Beutler and her husband, Dan, heard the baby’s heartbeat on an ultrasound.
“That’s pretty convincing. We know she’s still alive,” Dan Beutler told CNN in 2017. “We had this gut feeling of ‘there has to be something.’ ”
The couple sought out an experimental treatment at Johns Hopkins Medicine in which doctors transfused saline solution into the uterus to help mimic amniotic fluid. After a series of weekly infusions, their daughter, Abigail, was born 12 weeks prematurely. She survived on dialysis until she was big enough for a kidney transplant from her father.
In a 2019 essay in the Wall Street Journal, Herrera Beutler wrote that Abigail was a “healthy, happy big sister.”
“Through divine intervention and some courageous doctors we now have Abigail in our lives,” she wrote.
Herrera Beutler, now a strategic adviser to the Children’s Hospital Association, did not respond to requests for comment on this story.
Abigail’s parents have said she is the first baby without kidneys to survive childbirth. A 2014 Hopkins news release called Abigail’s survival “a medical marvel.”
A study on babies with Potter syndrome
In 2017, Hopkins and several other academic medical centers started a clinical trial to see how well the saline treatment worked.
In the study, 18 pregnant women whose fetuses did not have kidneys received uterine saline infusions. They went to the researchers one to three times a week, and each time, the doctors inserted a needle into their uterus for the procedure, which could take up to an hour. They made these visits for about 11 weeks.
Four of those 18 children are still alive, according to Dr. Jena Miller, an assistant professor at the Johns Hopkins Center for Fetal Therapy and co-principal investigator of the study.
One baby was stillborn, and the other 17 were born prematurely and alive. Of those 17 babies, 14 survived to 2 weeks of age. Over the next two years, eight of those 14 children died without ever leaving the hospital.
The remaining six babies spent an average of about six months in the hospital and then went home. Two later died; the other four are on dialysis. None has received a kidney transplant.
Miller presented preliminary results from the study at a February meeting of the Society for Maternal-Fetal Medicine. The research has not been peer-reviewed or published in a professional journal.
She noted that in the study, even when babies did survive, they are “medically complex and have required multiple surgeries.”
“You’re subjecting parents to a very medically complex child, and for some families, they’re happy. They’re OK with doing that,” she said. “The family that chooses that, they’re all in for that. But it’s their choice to make. There are absolutely families that just do not have the resources or the capacity for that journey. They would not choose that journey for themselves or their child.”
A YouTube video raises funds for the Dorberts
By the time the Dorberts got the news that her doctors wouldn’t terminate Deborah’s pregnancy, she was 27 weeks along.
As the baby grew, Dorbert started having terrible pain in her ribs and back, much worse than anything she’d experienced during her pregnancy with Kaiden. She says her obstetrician explained that without cushioning from the amniotic fluid, the baby had a more direct impact on her body.
Dorbert says they didn’t have the money to travel out of state to get an abortion. By this time, they’d left their jobs at Publix; she was doing Instacart deliveries, and Lee was working at an insurance company.
A few weeks later, at 31 weeks pregnant, she had a regular visit with her longtime family physician, Dr. David Berger.
She told him about how carrying a baby she knew would die had taken a terrible toll.
“I just got very depressed, and the anxiety was horrible. I just didn’t want to get out of bed most days. I would just break down crying,” Dorbert told CNN. “[I] just didn’t want to do anything but sit on the couch and cry.
“I continued to feel this baby move,” she added, “knowing that I’m going to give birth and watch my child pass.”
Having to stay pregnant hurt not just her, she said, but also her husband and son.
“I really stepped back as a mom because I struggled,” she said. “He’s a 4-year-old boy, he wants to have fun, he wants to play, and he wants his mother to play with him.” But instead, she told Kaiden to watch TV as she lay on the couch.
Lee Dorbert said it was “painful for me to watch” his wife suffer, as there was “nothing I could really do besides just being there for her.”
“This brings me so much sorrow to see that a couple – or anybody – would have to go through something like this. In all honesty, it makes me embarrassed to be a Floridian,” Berger said in the YouTube video.
Viewers offered the Dorberts money to travel out of state to terminate the pregnancy. But the couple worried that they would get arrested.
Florida law doesn’t forbid such travel, but the Dorberts were concerned.
“The thing that scared us [was] we didn’t know if we’d go to jail. We didn’t know if we’d be fined. We still had another son. We couldn’t have anything happen to us, because we have another child,” Deborah said.
As the weeks passed, Kaiden watched his mother’s belly grow. At first somewhat indifferent to having a sibling, he began to warm up to the idea.
“As we continued to see my belly grow, he knew there was a baby in there,” she said. As he saw and felt the baby move, “he was getting excited. He’s like, ‘there’s a baby in your tummy!’ ”
Kaiden was so looking forward to meeting his little sister – they didn’t know the sex at the time, but he assumed it would be a girl – that he urged his mother to “just spit the baby out.” In his mind, he and the baby were already a team, and so when his parents urged him to pick up his toys or eat his vegetables or take a bath, he would say, “my sister told me I don’t have to do that.”
Unsure of what to tell Kaiden, the Dorberts consulted a therapist and decided it would easier on their son if they waited until just before the baby was born to let him know his sibling wasn’t coming home.
On February 18, a few weeks before she delivered, the Washington Post published a story about the Dorberts.
Deborah said it elicited one “hateful” letter, but she took some comfort from many “heartwarming” emails the Washington Post reporter forwarded her from readers who sent “their love and kindness.”
‘He passed away in my arms’
Once she got to 37 weeks, Dorbert’s obstetrician told her they could induce labor. The night before delivery, they told Kaiden that the baby had died, and he broke down crying.
The next day, after birth, Milo “looked more on the blue side. He gasped for air, and you could tell he was really trying hard to breathe,” Dorbert remembers.
His parents and Deborah’s parents cuddled him for 94 minutes before he took his last breath.
They were “making sure he felt loved, and he wasn’t in pain, even though I knew he was in pain,” Deborah said.
Lee sang to Milo “Three Little Birds” by Bob Marley & The Wailers and read him the book “I’ll Love You Forever” about a polar bear cub – Kaiden’s favorite story.
“He didn’t open his eyes at all when we held him, and he passed away in my arms,” Deborah said.
Milo’s tiny hand- and footprints were taken and memorialized inside the front cover of the book.
She said she knows it would have been emotionally wrenching if the pregnancy had been terminated when her baby’s birth defect was first spotted, at 24 weeks. But being forced to carry the baby for 13 more weeks, knowing that he would die, made it even more horrific.
Those 13 weeks are what led to the anxiety and depression and debilitating back pain, she said, making it harder on her, Lee and Kaiden. It was during those 13 weeks that Kaiden got so excited to have a new sibling, only to have that joy taken away.
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She still suffers emotionally and physically from those 13 weeks, and it took a toll on her marriage.
She and Lee are now in marriage counseling. “We’re making small steps, but it’s going to take time,” she said.
Deborah is angry at the politicians whom she blames for forcing them to experience those gut-wrenching 13 weeks.
“I think they need to leave it up to the doctors to treat each and every one of their patients the way they need to be treated,” she said. “I don’t think politicians have a place [in] health care. That’s why we have doctors.”
Her physicians have reassured her that she’s not at higher risk of having another child with Potter syndrome. Her husband and son want another child, Deborah said, but at this point, she doesn’t.
“I can’t go through another trauma like this pregnancy,” she said. “I felt the baby the whole time.”
CNN’s Kyla Russell contributed to this report.