In an open letter, Congresswoman Jaime Herrera Beutler, R-Camas, Clark County, said doctors are optimistic about the future for her daughter Abigail, who suffers a serious medical condition previously considered fatal.
Since delivering Abigail in late July — three months early — Herrera Beutler and husband Daniel have stayed with their daughter at Lucile Packard Children’s Hospital in Palo Alto, Calif.
“Dan and I continue learning how to manage her day-to-day care while she gets healthier and overcomes her health challenges,” Herrera Beutler said in the letter, released Thursday. “Of course we hope to come home with Abigail as soon as possible, but the truth is we don’t know precisely when that will be.”
In the meantime, Herrera Beutler will continue with her duties as representative for Washington’s 3rd Congressional District.
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“While it’s not possible for me to resume a full congressional schedule until after Abigail can be brought home,” she said, “I am in touch with my staff continually and with the House leadership sharing my views when needed.”
Herrera Beutler relived the moment her unborn daughter was diagnosed with Potter’s syndrome during an interview Friday on NBC’s “Today” show. She also said her daughter, now about 7 weeks old, is starting to act more and more like a typical baby.
“She is doing amazing,” Herrera Beutler said during the remote interview. In the last couple of days, she added, “we’ve gotten to the point where we’re holding her. She’s playing. She will scream when her diaper’s dirty. She is like any other baby. She has a few challenges, but, man, she’s determined.”
Herrera Beutler’s first child, Abigail Rose Beutler, was born without functioning kidneys. The type of Potter’s syndrome she was diagnosed with was previously considered fatal because the baby is typically born without fully developed lungs. Herrera Beutler, however, underwent an experimental treatment — saline injections in her womb — that allowed the baby’s lungs to develop.
“It is the worst moment in your life,” Herrera Beutler said of receiving the diagnosis. “He [the doctor] was looking at us, he was telling us, ‘Your baby has no options. It is incompatible with life. It’s terminal.’ And at that moment she was moving, I mean she was moving in me, and he’s telling me she’s not going to live.”
Herrera Beutler was joined by husband Daniel during the three-minute TV interview.
Daniel Beutler advised parents in a similar situation to not be satisfied with just one medical opinion.
“Work hard to find one that will partner with you to make sure that anything possible will be at least tried,” he said.
Herrera Beutler said most of the doctors she met with were unwilling to try any unproven treatments. Then a woman who had heard Herrera Beutler’s story gave her the name of a doctor who eventually performed the saline injections. Herrera Beutler said she hopes her experience paves the way for other mothers facing the same situation.
“We’d like this to be part of the conversation when this diagnosis comes again, so these parents have an option,” she said.
The baby is now undergoing dialysis, and she will eventually need a kidney transplant.
The congresswoman will travel back and forth between the Palo Alto hospital and Washington, D.C., to participate in critical votes; she plans to be in D.C., she said, to vote on the president’s request for authorization of military force in Syria.