Republican congresswoman from Washington state, Jaime Herrera Beutler, is temporarily stepping away from her infant daughter’s hospital bed in Palo Alto, CA, to be part of the upcoming vote on Syria. The Representative plans to return to her full duties once her daughter is healthy enough to go home but until then, Herrera Beutler will commute to Washington, D.C. for key votes.
Abigail Rose Beutler is currently at the Lucile Packard Children’s Hospital in Palo Alto. Five months into the pregnancy, the Beutlers were informed that Abigail had Potter’s Syndrome. Doctors there say that she will be on dialysis until she is able to withstand a kidney transplant about a year from now but they remain positive about her future. Abigail—born three months premature—may be the first child to survive the grim condition due to an experimental procedure.
Herrera Beutler and husband, Daniel Beutler, were interviewed on the Today show Friday morning about their daughter’s condition and progress. Herrera Beutler said Abigail, “is doing amazing,” and, “we’ve gotten to the point where we’re holding her. She’s playing… She has a few challenges; but man, she’s determined.”
At the time of the diagnosis, Abigail had no kidneys, therefore she was producing no fetal urine and that results in little or no amniotic fluid, preventing lungs from developing. Typically a baby with this type of Potter’s Syndrome is born without fully developed lungs and so the likelihood was that the child would die. In the Beutler’s case, they opted for an experimental treatment which involved uterine saline injections; those permitted Abigail’s lungs to develop.
Herrera Beutler expressed the couple’s feelings when the diagnosis was presented to them: “It is the worst moment in your life… He (the doctor) was telling us, ‘Your baby has no options.’ 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.”
Daniel Beutler’s advice to other parents facing similar news is to not settle for just one medical prognosis, “work hard to find one that will partner with you to make sure that anything possible will be at least tried.”
The couple explained that most of the doctors approached were not willing to try treatments that had so far been unproven. They were referred by a woman who heard their story to the doctor—from Johns Hopkins hospital in Maryland—who would eventually try the injections. This word-of-mouth recommendation is part of what prompted the couple to tell their story on the NBC morning program, so they could widen awareness of the treatment.
Representative Beutler announced her pregnancy on Facebook last May, and today’s posting is a recommendation to watch the Today interview. She credits colleagues in Congress for supporting her and her family through this challenging time, specifically citing communications from House Speaker John Boehner and Minority Leader Nancy Pelosi.
[Image via Representative Beutler’s Facebook.]