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 in June 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.
Then, in July, Beutler said Abigail was doing well two weeks following her birth.
Now, in a new interview with the Today show, the congresswoman gave another update about her little girl.
Abigail will need a kidney transplant in the year ahead, but her parents and doctors consider the child a miracle.
“She is doing amazing,” Jaime said. “In the last couple of days, we got to the point where we’re holding her. She’s playing. She will scream when her diaper is dirty. She is like any other baby. She has a few challenges, but man, she’s determined.”
Daniel said they hope their experience sends a message to other parents who may be in similar situations.
“There are no guaranteed solutions and there’s no necessarily magical cures, certainly for (Potter’s Syndrome), but don’t be satisfied with one opinion because there are a lot of intelligent doctors with different perspectives and experiences and opinions, so work to find one who will partner with you to find anything possible,” he said.
Jaime said they learned about the Johns Hopkins physician after another parent slipped her a name and said, “Here’s a doctor who might try.”
“We had more doctors tell us ‘no’ than tell us ‘yes,’ and there are other parents who have had similar experiences,” she said. “We’d like this to be part of the conversation when this diagnosis comes again, so these parents have an option.”
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