A Florida woman who was unable to obtain an abortion due to the laws in her state carried a child to term with no kidneys.
Deborah Dorbert's Milo died in Deborah Dorbert’s arms just a few days after his birth, as predicted by her doctors.
Dorbert, 33, said, "He gasped a few times for air when I held him." 'I held my child as he breathed his last breath and watched him take his first one.
She claimed that her pregnancy had been going well until November when an ultrasound revealed that, at 24 week, the fetus lacked kidneys, and she had very little amniotic liquid. Her doctors warned her that not only would the baby die, but she was also at high risk for preeclampsia.
Her doctors informed her that it was too late for her to terminate the pregnancy because Florida prohibits abortions after 15-weeks. Dorbert and husband did not have the funds to travel out of the state for an abortion.
It was a 13-week agonizing experience of worrying about her health and carrying a child she knew would not survive. Dorbert suffered from severe anxiety and depression, the first time ever in her life.
Florida law allows abortions if two doctors confirm in writing the diagnosis of a fatal abnormality. However, doctors in Florida as well as other states with similar laws are hesitant to end such pregnancies out of fear that someone might question whether or not the abnormality is truly fatal. Violations of the law can lead to jail time, heavy fines, and legal fees.
CNN reached out Florida state Reps. Erna Grall and Jenna Persons Mulicka who sponsored the 15-week state ban.
Grall didn't respond. Persons-Mulicka emailed a statement.
The intent of the law was quite clear. She wrote that we are giving mothers the tools they need to raise healthy kids, empowering doctors so that they can help their patients to make informed decisions and changing the conversation about the value of life.
Ron DeSantis has signed into law a more restrictive measure which would ban abortions after six weeks in Florida, except for fatal fetal anomalies. The law will not go into effect until either the state Supreme Court changes its abortion precedent or dismisses a case that challenges state abortion restrictions.
Doctors scramble for abortion laws
Deborah and Lee met in 2014, while working at Publix, Lakeland, Florida. She was a clerk, and he led the team in the grocery section. Three years later they married, and their son Kaiden followed a year later.
The couple were thrilled to learn that they would be having a second baby last year. Dorbert took Kaiden to her ultrasound appointment the day before Thanksgiving when she was 23-weeks pregnant.
The four-year-old child was fascinated, watching the screen as the technician pointed out each baby's characteristics.
Dorbert recalled that he would say, "yeah there's an eye" or "there's a hand". He was thrilled to see the baby's image on the monitor.
The technician left the room and went to find the obstetrician.
The ultrasound report from her obstetrician that day revealed a grim diagnosis. There was no left kidney and there was also no right kidney. The baby also had too little fluid in the amniotic sac, and its heart was swollen. Dorbert was referred to an expert in high-risk pregnancies by the obstetrician.
It took the Dorberts a week to get an appointment with the specialist because of the holiday. A more detailed ultrasound revealed that the baby was born without kidneys and had underdeveloped lungs.
Deborah recalls that the condition was called Potter syndrome and that the specialist told her it was "incompatible with living". She claims that the doctor told Deborah the baby was going to die or be stillborn within minutes or hours after birth.
According to Dr. Erika Wener, the chair of the Department of Obstetrics and Gynecology at Tufts Medical Center and spokesperson for the Society for Maternal-Fetal Medicine, in this situation doctors who practice in states which allow abortions give parents two choices.
The first is to induce the birth of the baby and, if it is still alive at its birth, provide comfort care up until his death. The other option is to bring the baby to term.
The Dorberts informed the specialist they wanted to induce childbirth, ending the pregnancy to spare their baby, them and their older son suffering. The doctor said that he agreed with their decision.
Dorbert said that the doctor had told her in every case he'd seen that 'that's always the result - someone's child went stillborn. And the ones who did deliver, the baby passed shortly after birth.
The doctor told me he'd need to check with the administration, because the Florida law had just come into effect and banned most abortions beyond 15 weeks.
The law allows an exception in cases where 'two doctors certify in written form that in their reasonable medical judgement, the fetus is suffering from a fatal fetal anomaly'. This condition, according to the law, is 'a terminal illness that in the reasonable medical opinion, regardless of any life-saving treatment, will cause death at birth or shortly thereafter'.
A month went by without any decision. Dorbert's doctor informed her, finally, that she would not terminate the pregnancy. Dorbert had 27 weeks of pregnancy at this time.
Dr. Stephanie Ros is a high-risk pregnancy specialist in Tampa, and spokesperson for the Society for Maternal-Fetal Medicine. She said that she was not surprised by the doctor's refusal to perform the termination.
There are few absolutes in health care. She said that there are many issues which are nuanced. "The moment that the law was passed, everyone scrambled to understand what it meant."
The penalties for a doctor who is found guilty of breaking the law are harsh: five years of prison, $5,000 in fines and high legal fees.
Ros, associate professor at University of South Florida said that, after the law passed, she, along with colleagues from Florida academic medical centres, compiled a list of conditions which they deemed fatal fetal anomalies. On the list was renal agenesis, the absence of kidneys.
She said that for this reason she would be comfortable terminating a pregnancies with a fetus who has this condition. However, she "absolutely" understands why doctors outside of academic medical centers would refuse, like Dorbert's Obstetrician.
She said, "It is tricky because this law was originally written."
A medical marvel
Dorbert's case is complicated by the fact that a woman whom she has never met was pregnant 10 years ago.
Jaime Herrera Beutler was a Republican US Congresswoman from Washington State when she discovered in 2012 that she was pregnant. Her baby, too, suffered from Potter syndrome. This condition is not limited to the kidneys. Amniotic fluid is produced by the kidneys, which a fetus breathes into its lungs. If there is not enough, then it can affect lung development.
The placenta is the source of oxygen for the baby in the womb. After birth, however, the baby will be on their own.
Her husband Dan and she heard the heartbeat of her baby during her pregnancy.
"That's pretty persuasive. Dan Beutler, a CNN reporter in 2017, said: 'We know she's alive.' We had a gut feeling that 'there must be something'. '
A couple went to Johns Hopkins Medicine for an experimental treatment in which doctors transfused the saline into the uterus, simulating amniotic liquid. Abigail was born 12 weeks early after a series weekly infusions. She was on dialysis for several years until she was large enough to receive a kidney from her father.
Herrera Beutler, in a Wall Street Journal essay published in 2019, wrote that Abigail is a "healthy and happy big sister."
She wrote: 'Through divine intercession and a few courageous doctors, we now have Abigail Abigail's in our lives.
Herrera Beutler did not respond when asked to comment on the story. He is now a strategic advisor to the Children's Hospital Association.
Abigail is said to be the first child born without kidneys. In a 2014 Hopkins press release, Abigail's miraculous survival was called 'a miracle'.
Study on babies with Potter Syndrome
In 2017, Hopkins, along with several other academic medical centres, began a clinical study to determine the effectiveness of saline therapy.
In this study, 18 women who were pregnant and whose fetuses lacked kidneys received uterine infusions of saline. The women visited the researchers between one and three times per week. Each time, doctors would insert a needle in their uterus to perform the procedure. This could take an hour. These visits lasted for approximately 11 weeks.
According to Dr. Jena Miller, assistant professor at Johns Hopkins Center for Fetal Therapy, and co-principal researcher of the study, four of these 18 children are still living.
One baby died, but the remaining 17 babies were alive and prematurely born. Fourteen of the 17 babies survived until they were two weeks old. Eight of these 14 babies died within the next two-year period, never leaving the hospital.
The six remaining babies spent on average six months in hospital before going home. Two of the babies died later; the remaining four are currently on dialysis. No one has had a kidney transplant.
Miller presented the preliminary results of this study at the Society for Maternal-Fetal Medicine's February meeting. The research was not peer-reviewed nor published in a professional publication.
She said that even in the study when babies survived, they were'medically complicated and had required multiple surgeries'
Some families are happy to have a child with a complex medical condition. She said that they were fine with it. The family who chooses this will be all for it. It's up to them. Families that simply do not have the means or capacity to make that trip are a minority. They wouldn't choose this journey for their child or themselves.
A Dorberts YouTube video raises money for the Dorberts
Deborah was already 27 weeks pregnant when the Dorberts learned that Deborah's doctors would not terminate her pregnancy.
Dorbert began to experience severe pains in her back and ribs as the baby grew. This was much worse than what she had experienced during her previous pregnancy. Her obstetrician told her that the amniotic liquid was not cushioning the baby's impact, so the pain she felt in her back and ribs was much worse.
Dorbert claims that they did not have the funds to travel to another state for an abortion. They had both left Publix by this point; Lee worked at an insurance firm, while she did Instacart delivery.
She had her regular check-up with Dr. David Berger, her family doctor, a few weeks later.
She described how the stress of carrying a child she knew was going to die took a terrible emotional toll.
I was very anxious and depressed. Most days, I didn't even want to get up. Dorbert said to CNN, "I would break down in tears." I just wanted to sit on the sofa and cry.
She continued, 'I felt this baby move', knowing that she was going to give birth to her child and then watch it pass.
She said that being pregnant for so long hurt her and her family, including her husband.
She said, 'I really had to step back as a mother because I was struggling.' He's a four-year-old, and he's looking for fun. He wants to play. And he's asking his mother to join him. She told Kaiden instead to sit on the couch and watch TV.
Lee Dorbert stated that it was painful for him to see his wife suffer because he could 'do nothing more than be there for her'.
Berger, furious at what his patient was going through, published videos with Deborah's consent on YouTube and TikTok, on 26 January, and on 2 February and 24 February, he posted more TikTok video.
It makes me sad to think that anyone - a couple or not - could have to endure such a thing. Berger stated in the video that he was embarrassed to be Floridian.
The Dorberts were offered money by viewers to travel to another state and terminate their pregnancy. The couple were worried about being arrested.
Florida's law does not prohibit such travel but Dorberts was concerned.
The thing that made us scared was not knowing if we would go to prison. We didn't even know if there would be a fine. We had another child. Deborah said, "We couldn't let anything happen to us because we still have another son."
Kaiden watched as his mother's tummy grew over the weeks. He was initially apathetic about the prospect of having a brother or sister, but he gradually warmed up to it.
As we watched my belly grow, I knew that there was a child inside.