U.S. Rep. Jaime Herrera Beutler relived the moment her unborn daughter was diagnosed with Potter’s syndrome during an interview Friday morning 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 prematurely in July 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.
Herrera Beutler was joined by her husband, Daniel Beutler, during the three-minute interview.
“It is the worst moment in your life,” Herrera Beutler said of hearing her unborn daughter’s diagnosis. “(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.”
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 treatments at the Lucile Packard Children’s Hospital in Palo Alto, Calif., and she will eventually need a kidney transplant.