Nearly three years ago, U.S. Rep. Jaime Herrera Beutler and her husband, Dan, received devastating news.
An ultrasound revealed their baby had no kidneys; a rare condition called Potter syndrome.
“The doctors said, ‘It’s 100 percent fatal,’ ” Jaime, a Republican from Washington state, tells PEOPLE. “She will either be stillborn, you’ll miscarry or she will suffocate in your arms after she is born.”
Instead of just accepting the dire prognosis, the couple decided to keep fighting – and subsequently learned of a simple treatment (saline injections into the womb) that ultimately saved their baby’s life.
Abigail Beutler is the first child with Potter syndrome known to have survived – a bona fide miracle baby. And on Feb. 8, after nearly three years on dialysis, she finally got a kidney – from her dad.
While Jaime and Dan were both matches, he wanted to be the donor, he says.
“I wanted to help,” says Dan, 34, who put law school on hold three years ago to be Abigail’s full-time caregiver. “I wanted to do everything I could to make her life better.”
There is another reason it was better for him to be a donor: Jaime is pregnant with Abigail’s brother, Ethan, who is due May 21.
This time there have been no complications.
The couple continues to share their story to encourage others with a similar prognosis to discuss this option with their doctor.
“Our big thing was this [treatment] should be part of the conversation,” says Jaime. “We just feel like no parent should be told what we were told. Parents will do anything in a situation like this and we certainly don t want to mislead that this is a panacea but they should be told that this could be an option.”
A Deadly Diagnosis
The first ultrasound Jaime had at about 10 weeks to confirm the pregnancy was normal so she and Dan had no reason to expect any bad news at the 20-week appointment.
Their tech that day in May 2013 was the same guy they’d had for the first ultrasound.
“He turned on the machine and started the ultrasound and where he had been really bubbly and kind of interactive a few weeks prior, “says Dan, “his face just tightened up and got really serious and really quiet.”
Unable to decipher the ultrasound themselves, Dan and Jaime had no idea what had alarmed the technician.
Finally, “He just got ashen and said, ‘I don’t see the kidneys,’ ” says Jaime. “We didn’t have any idea what it was but I knew at that point it was bad.”
Not long afterward two doctors confirmed the baby had no kidneys and told them she had zero chance of survival.
All the while, Jaime could feel the baby kicking inside of her.
“As he’s saying, ‘The baby is not going to live,’ I remember thinking, ‘Boy she clearly disagrees,’ ” she says. “I was a mess. A total mess. I remember looking at Dan and was like, ‘Is this really happening?’ ”
They left the hospital too shattered to make any decisions.
“We got home and we just lost it,” Jaime says. “I remember sitting on the floor sobbing and Dan comes over and puts his arm around me So in my mind I m starting to feel like, ‘They tell us with 100 percent certainty she will not live. Yet she s alive right now.’ How do you square that in your mind? You don’t. You totally lose it.”
By the following day they’d decided to keep fighting for their child and flew home to Washington state to seek a second opinion, though it ended up being no better than the first.
That’s when they had to make yet another heartbreaking decision – going public with their baby’s prognosis.
“I’d barely made it public that I was pregnant,” says Jaime. “I don’t think we ever would have walked this out publicly but we didn t have a choice There’s no way to hide something like this. I also didn’t want to walk around having everybody keep saying ‘Congratulations. It s so wonderful’ and inside your heart s breaking.”
That decision led to an unexpected gift.
Rob Volmer, who owns his own public relations company in Washington, D.C., was at a hotel waiting for a client and happened to pick up a copy of USA TODAY that was lying there.
It’s not a newspaper he normally reads.
Inside was a story about Jaime’s baby’s diagnosis.
“I thought, ‘I know the doctors are wrong but she’s not going to believe me,’ ” he tells PEOPLE. “I have to find someone to get an introduction to me.”
He did and when he and Jaime finally connected, he told her how his son had a similar diagnosis (though it ended up being a different disease) and that amnio infusions of saline into his wife’s uterus saved his life.
“He said, ‘Have they done this? Have you asked this? What about this? And I was like, ‘No. No. No,’ ” says Jaime, “because at that point, a doctor tells you something, several doctors tell you something, who are we to question it? We didn’t know. We’re not doctors.”
He put her in touch with Dr. Jessica Bienstock, a perinatologist at Johns Hopkins Hospital in Baltimore who had helped his wife. Jaime got an appointment that same day.
The premise of saline infusions is simple: in a normal pregnancy, the baby’s kidneys help produce the amniotic fluid needed for overall development and, crucially, the lungs to grow. If a baby does not have kidneys, their lungs cannot develop normally and they cannot breathe after birth. The saline injections provide the fluid that is missing.
Bienstock eventually agreed to try an infusion but was not optimistic after looking at Jaime’s ultrasound.
I “saw a fair number of structural deformities – her head was misshapen; her feet looked clubbed and her chest looked small,” she tells PEOPLE. “Honestly after the first infusion I thought, ‘Oh. It does not look good.’ ”
But Jaime and Dan wanted to try, anyway.
“The difference between 0 percent hope and .00001 percent hope is enormous,” says Dan.
When Jaime came back a week later “all of a sudden everything looked good,” says Bienstock. “The head was shaped normally now; the chest looked like it might have grown some; she was moving around. And it was like, ‘Oh.’ ”
They decided to continue.
Jaime fit the weekly treatments around her congressional schedule, rising at 4 a.m. to drive to Baltimore then return to D.C.
As the weeks went on, “we kept putting fluid in and her chest circumference grew,” Bienstock says. “We saw Abigail practicing breathing inside. So we thought, ‘OK. Fine. Let’s keep going.’ ”
And she did – until July 11. Jaime was on the House floor when, two months premature, she started feeling the pains of labor. Four days later Abigail was born at a Portland, Oregon, hospital. Weighing only 2 pounds, 12 ounces, she arrived with a cry – her lungs worked just fine. Jaime recalls thinking, “That’s our miracle.”
Since then the couple has been waiting for Abigail to be big enough to finally get her own kidney – and get off dialysis.
Today she is a happy, healthy toddler, with more energy than ever. The weeks spent back in the hospital for the transplant were not easy, Jaime admits. Though she was six months pregnant, Abigail wanted her close by so she slept in the hospital bed with her – which meant she wasn’t getting much rest.
“After about seven nights I was thinking, ‘This is really tough,’ ” says Jaime. “Then I just stopped and looked at her and said, ‘Oh my goodness. She wasn’t even supposed to be here and now she’s got this amazing whole life in front of her.’ We’re incredibly blessed and it’s worth it.”