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Congresswoman Opens Up About Ignoring Doctors, Choosing Life for Daughter Born with Rare Condition

Photo credit: Jaime Herrera Beutler/Facebook
Photo credit: Jaime Herrera Beutler/Facebook
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By Carly Hoilman
Writer

June 12, 2017

CNN published a profile of Rep. Jaime Herrera Beutler (R-Washington) Monday as part of its “Badass Women of Washington Series.” In the piece, titled “How Rep. Herrera Beutler saved her baby,” reporter Dana Bash details the greatest personal battle Herrera Beutler has faced while serving in Congress.

READ: Congresswoman ‘Prayed for a Miracle’ after Unborn Baby’s Fatal Diagnosis — and That’s Exactly What She Got

“Rep. Jaime Herrera Beutler, R-Washington, was the ninth lawmaker in history to have a baby while serving in Congress,” Bash writes. “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.”

Shortly after being reelected for a second term in Congress in 2012, Herrera Beutler and her husband, Dan, discovered that they were expecting their first child. They were thrilled.

But a few weeks later, during a sonogram appointment to discover the sex of the baby, doctors informed the couple that something was terribly wrong.

“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 recalled.

The congresswoman’s unborn daughter was diagnosed with Potter Syndrome, a rare condition that develops in utero when a child has no kidneys. The Beutlers were told their child had no chance of survival.

“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,” Herrera Beutler said.

Her doctor then recommended that she abort her child.

“You know, a lot of women at this point would be across the street scheduling an abortion,” she recalled the doctor telling her. 

But the Beutlers both knew that terminating the pregnancy was not an option for them. Even with such a grim diagnosis, they clung to what little hope they had of their baby girl surviving.

“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.

When it comes to politics, Herrera Beutler adamantly pro-life. But when it came to her own pregnancy, the congresswoman says politics wasn’t a factor.

“You’re not thinking, ‘What’s my political stance on this?'” Herrera Beutler said.

For her, the decision was much more personal than it was philosophical. She couldn’t handle being the one to “end the heartbeat.” The Beutlers said they wanted to “know we did everything we could.”

“It was more of our gut,” Herrera Beutler explained. “Like, there’s — we, we gotta — and that was the word we used: contend. We’re gonna contend.”

Part of the task of “contending” meant announcing the devastating news, and leaning on fellow members of Congress for support. She relayed the doctors’ comments to her friends: The possibility of a miscarriage was high, and the possibility that her baby would survive was zero.

“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 said.

Shortly after the Beutlers went public with their news, a stranger who heard their story reached out through a mutual friend. He suggested an experimental treatment that would end up being the key to saving their daughter: saline injections into the uterus that would help the baby develop even without kidneys.

The biggest challenge, however, would be finding a doctor that was willing to test the treatment. Calls to hospitals went unanswered, until finally, a doctor at Johns Hopkins in Baltimore, Maryland, finally agreed. Even then, the doctor 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 doctor told Herrera Beutler.

According to CNN, infusions containing a simple saline solution “would help mimic the amniotic fluid that enables a fetus to grow normally” without the kidneys.

“It was almost a sales pitch,” said Herrera Beutler, recalling how hard it was to persuade the doctor to perform the simple procedure.

“It’s not new technology,” she explained. “It was a willingness issue.”

Hospitals were insistent that the baby’s lungs were past the point of development. Even with added fluid, it was likely too late to change anything.

But the Beutlers persisted. Finally, the doctor agreed to try one round. They saw results right away.

“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,” Dan Beutler said, tearing up as he recalled the powerful moment.

In order to continue treatment, Herrera Beutler had to drive an hour-plus each way to Baltimore before starting her day on Capitol Hill. But by the fourth week of saline injections, there was no question as to whether the trek was worth it: Her daughter’s chest began to open up, her feet took on a normal shape — no longer clubbed, and her lungs were developing normally.

Abigail Rose Beutler was born at 28 weeks, becoming the first child ever to survive being born with no kidneys. She survived on dialysis until she was big enough to receive a kidney transplant last year. The donor? Her father.

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

But the giving didn’t stop there. Dan Beutler also gave up his career, quitting law school in order to take care of his growing family.

“He’s the next generation of leaders,” Herrera Beutler said of her husband. “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 a healthy 3-year-old who enjoys being a big sister to her baby brother. Her parents are now using their story to spread hope to others.

“There are other babies who have survived because of her,” Herrera Beutler said. “One just got her transplant last week, another, two weeks ago.”

The congresswoman regularly receives calls from around the world regarding her daughter’s miraculous survival. People have told her, “Now, when I Google this horrible diagnosis, we know that there’s hope.”

(H/T: CNN)

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