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How Rep. Herrera Beutler saved her baby

Story highlights
  • Rep. Jaime Herrera Beutler (R-Washington) was the ninth lawmaker in history to have a baby while serving in Congress
  • Their unborn baby had Potter Syndrome, a condition that develops in utero when there are no kidneys

Washington(CNN) Several years ago I did a Mother's Day story on a relatively new phenomenon in Congress -- an increasing number of lawmakers giving birth while in office. It was happening, of course, because more young women were running and getting elected.

Rep. Jaime Herrera Beutler, R-Washington, was the ninth lawmaker in history to have a baby while serving in Congress. That alone would have been a good reason to tell her story. But what she went through to have -- and save -- her baby is truly badass, a lesson in courage from a woman who wouldn't take no for an answer.

In 2012, not long after her reelection to a second term in Congress, Herrera Beutler and her husband, Dan, announced that they were expecting their first child. 

Then, during what they thought was a routine sonogram, their joy turned to terror. 

"We were kinda chatting away, like, all excited, you know, 'cause we thought we were gonna get to figure out what the sex was," she recalled.

Then the technician's face turned grim.

"He just leaned forward and he said, 'I can't see any kidneys. I don't think your baby has any kidneys.' And I knew -- and we knew it was -- whatever it was was bad," Herrera Beutler remembered.

Devastating Diagnosis

Their unborn baby had Potter Syndrome, a condition that develops in utero when there are no kidneys. The Beutlers were told it was 100 percent fatal. 

"They took us into a back room and just said, 'There's nothing that can be done. Your baby's gonna die.' And we're at this point, just, you're weeping," she said, holding back her emotions.

The recommendation from their doctor was blunt.

"You know, a lot of women at this point would be across the street scheduling an abortion," she says the doctor told her.

But the Beutlers both said they just couldn't do it.

"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," said Dan Beutler.

As a politician, the congresswoman is staunchly anti-abortion. But in this -- the most personal of decisions -- she says her political views were not a factor.

"You're not thinking, 'What's my political stance on this?'" said Herrera Beutler. Instead, she couldn't fathom being the one to "end the heartbeat."

She said she has since met "amazing, brave courageous women" who have made different choices. But the Beutlers said they wanted to "know we did everything we could."

It was more of our gut. Like, there's -- we, we gotta -- and that was the word we used: contend. We're gonna contend," said Herrera Beutler.

Fighting to Save Their Baby

First, as a member of Congress, Herrera Beutler felt she needed to announce the heart-wrenching news.

"My colleagues were amazing. But every time someone saw me on the [House] floor, you know, you kinda watch a little bit of a shadow, 'cause it's sad," she remembers.

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.

But most hospitals wouldn't even return her calls.

A doctor at Johns Hopkins in Baltimore, Maryland finally did, but she was very resistant. 

"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.'" 

The infusions were simple saline solution that would help mimic the amniotic fluid that enables a fetus to grow normally. Without kidneys to produce that fluid, the baby's lungs were not able to develop.

The Beutlers wouldn't take no for an answer.

"It was almost a sales pitch," recalled Herrera Beutler, who couldn't believe how hard it was to convince this doctor -- any doctor -- to do something so simple medically.

"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.

Using their experience to help others

Does Herrera Beutler think she would have been able to convince that doctor at Johns Hopkins to give the experimental treatment a try had she not been a member of Congress?

"I don't think we'll ever know for sure," she admitted.

When their daughter Abigail was finally born, she made medical history. She was the first baby to survive childbirth with no kidneys. People Magazine ran a spread calling her "the girl who lived." ABC News dubbed her survival a "miracle."

The Beutlers want their story told far and wide so that when other parents are given the devastating diagnosis, they won't immediately be told it is fatal. 

 "The one thing we have committed and we know is true is maybe it took this to break through, because now she's not the only. She's just the first. There are other babies who have survived because of her," said Herrera Beutler. "One just got her transplant last week, another, two weeks ago," she said.

Herrera Beutler explained that the calls come in from around the world, and people have told her, "Now, when I Google this horrible diagnosis, we know that there's hope."

A father's devotion. A modern husband.

Abigail is no longer living without kidneys. She survived on dialysis until she was big enough for a kidney transplant. The donor was 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. 

Abigail is now 3 years old. Watching her, you would never know the trauma she went through. She seems like an average little girl, playing with her baby brother and her toys and hanging out with her parents.

Except of course when she goes to work with her mother, that means going to the floor of the House of Representatives.

As a result, "Mommy votes," is how Abigail describes what her mother does for a living.

It's a lesson Herrera Beutler got from her own mother, who wasn't in Congress but was politically engaged. 

"My mother took us to the State capitol, and we were exposed, and early on, I thought, 'Oh, I have an interest here.' "

"It's just exposure. And typically, you know, there isn't that same exposure for women," Herrera Beutler said.

Now she is actively is trying to change that for young girls. One miracle baby at a time.