Rep. Jaime Herrera Beutler’s baby: “a lesson in courage from a woman who wouldn’t take no for an answer”

By Dave Andrusko

United States Congresswoman Jaime Herrera Beutler’s daughter is considered by doctors to be the first baby to survive Potter’s Syndrome.
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A tip of the cap to CNN for “How Rep. Herrera Beutler saved her baby,” a story that ran Monday.

Ignore the lame context. CNN is running a series answering the question several women discussed over lunch in early 2017: “what Hillary Clinton’s loss meant for women.”

Their answer is, “Women are already breaking barriers in a man’s town, muscling their way into power and staying there. Their stories show there are Bada_ _ Women all around Washington.”

Well, okay, if that’s what it takes to get a story about a genuine profile in courage by a pro-life Republican congresswoman and her husband, Daniel, so be it.

We first wrote about her “miracle baby” back in 2013. For newcomers to the story, Jaime and Daniel Beutler had received devastating news when they came in for a routine ultrasound. Their baby—their first—had a fatal condition for which nothing could be done. “It is the worst moment in your life,” Jaime, from Washington, told Savannah Guthrie of THE TODAY SHOW.

“He was looking at us, he was telling us ‘your baby has no options.’ It’s incompatible with life, it’s terminal,” she told Guthrie. “And at that moment, she was moving. She was moving in me, and he is telling me she’s not going to live. It was an amazing reality check.”

CNN picked up the story this week, just a little less than four years later, giving us an update on Abigail Rose and providing some background to that grim 2013 prognosis.

So what exactly was the baby’s condition that prompted their doctor to say (according to Jaime’s recollection) “You know, a lot of women at this point would be across the street scheduling an abortion?”

Abigail Rose had Potter Syndrome, a condition that develops in utero where the baby has no amniotic fluid which is “critical for lung development in the womb,” as the congresswoman wrote on Facebook. “Multiple doctors explained that based on medical evidence her condition was incompatible with life and that, if she survived to term, she would be unable to breathe and live only moments after birth.” She also had no kidneys.

Abort? Not the Beutlers. “”Being able to hear the heartbeat … we had this gut feeling of there has to be something — I mean, a doctor may say it, but she’s moving. That’s pretty convincing. We know she’s still alive,” Dan Beutler told CNN. Besides telling her fellow members of Congress, Congresswoman Herrera Beutler decided

She had to tell friends what doctors told her: The chances of miscarriage were high. The chances of her baby surviving: zero.

“What happens is your baby gets kinda shrink-wrapped,” she had quickly learned about babies with no kidneys. “They get squished — and their lungs are not able to develop.”

Going public turned out to be their ticket to saving their baby. A stranger read their story in a hotel newspaper and reached out through a friend of a friend. He suggested an experimental treatment that might be possible: saline injections into her uterus that would help the baby develop even without kidneys.

The therapy was ingenious. Without kidneys to produce amniotic fluid, Abigail Rose’s lungs were unable to develop. “The infusions were simple saline solution that would help mimic the amniotic fluid that enables a fetus to grow normally,” CNN’s Dana Bash wrote.

The point the Beutlers made repeatedly to Bash was that doctors were flatly unwilling to even answer phone calls about the treatment. A very resistant physician at John Hopkins finally agreed. Jaime Beutler told Bash, “We went up there the first time and she said, ‘Look, we don’t treat this. I will not be able to do serial infusions.”

But, Bash added, “The Beutlers wouldn’t take no for an answer.”

“It’s not new technology. It was a willingness issue,” said Herrera Beutler. Hospitals told the Beutlers that the baby’s lungs were past the point of development even with added fluid.

They finally convinced the doctor to try one round, and saw instant results.

“Immediately, when that fluid was introduced, her chest heaved and she began to breathe that fluid in. And so you don’t know what’s happening, but you know that she’s doing what she’s supposed to,” said Dan Beutler, who understandably gets choked up remembering that magical moment.

But it wasn’t a one-time cure. For the treatment to succeed, Herrera Beutler had to get saline injections regularly. That meant driving an hour-plus each way early in the mornings to Baltimore before she started her day on Capitol Hill.

By the fourth week of saline injections, the Beutlers say everything corrected: Her chest started to open up, her feet were no longer clubbed, and her lungs began to develop.

Abigail Rose survived on dialysis until she was big enough to tolerate a kidney transplant. The donor? Her father.

“I don’t think there are many parents who wouldn’t jump at the chance to help their kid,” said Dan Beutler.

He not only gave up his kidney but also gave up his career path. He quit law school to take care of his family, and his wife says that modern approach to gender roles has helped her succeed in Congress.

“He’s the next generation of leaders,” Beutler told me about her husband, beaming with pride. “He’s demonstrating that you can take on something as a team, and it ebbs and flows.”

“He’s showing my daughter, he’s showing my son that a real man looks at a family and says, ‘How can I help lead this family?’ He’s taking care of my baby, and he gave her his kidney, right? So he’s quite an amazing person. And I hope to get the chance to do the same for him,” she said.