When she was pregnant with her daughter Abigail Rose Beutler, doctors told Congresswoman Jaime Herrera Beutler, a pro-life Republican from Washington state, that her baby had a potentially fatal diagnosis that would claim her life shortly after birth.
Beutler posted a message on Facebook saying her unborn child had been diagnosed with Potter’s Syndrome, a condition which prevents the child’s kidneys from developing properly and is typically fatal for the baby.
In Potter’s syndrome, the unborn baby has an atypical physical appearance as the result of oligohydramnios, a decrease in amniotic fluid volume that causes developmental problems and babies with Potter’s Syndrome typically die within a couple days of being born.
But Dr. Jessica Bienstock at Johns Hopkins Hospital was willing to try an unconventional procedure, and Rep. Jaime Herrera Beutler (R-WA) and her husband, Daniel, now have a happy, healthy one-year old. Then, in July, Beutler said Abigail was doing well two weeks following her birth and she has continued to progress.
“We thought we were going to find out the sex so we were in there watching the ultrasound. And then he got right next to us and said, ‘I cannot see any kidneys,’ and I knew it was bad. We understood the gravity but we were like, ‘What does that mean?'” Herrera-Beutler recalled.
No kidneys meant the baby wasn’t producing amniotic fluid. Without it, her lungs and other organs couldn’t develop. It’s called Potter Syndrome, a condition doctors told them was 100 percent fatal.
“When she is moving inside of me and he is telling me she will not live? It was intense. That was intense,” said Herrera Beutler.
The couple was told Jaime would either miscarry or the baby would suffocate at birth.
“I have a framed ultrasound picture over here because I didn’t know how many pictures we were going to get,” Herrera Beutler said.
“We just both felt like we need to be parents now,” said Dan Beutler, “and fight for her and do whatever we can to save her.”
“We felt very strongly this is the baby God chose for us. She’s ours,” said the congresswoman. “So I’m not going to be the one to end it. In fact, we decided with some faith and some courage we’re going to fight.”
Now 14 months old, Abigail is on nightly home dialysis. She’ll need a kidney transplant soon and her dad is a match.
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Abigail’s story may now change the treatment protocol for Potter Syndrome. The Beutler’s personal story playing out in the public eye hasn’t been easy. But Herrera Beutler hopes their story inspires other families and gives them hope where there was once none.
“If we’re able to break through a barrier and we’re able to get to a ‘Yes’ because of this and another kid’s going to have a shot? Totally worth it,” said Herrera Beutler.