CAMAS, Wash. -- U.S. Rep. Jamie Herrera Beutler expects to bring her baby girl home after spending several months in a Calif. hospital for the treatment of the infant's rare, often terminal disease.
“It’s with great joy that we were finally able to bring Abigail home to Camas this week," Beutler said. "We are so grateful to the medical team at Lucile Packard Children’s Hospital in California for their care of Abigail during her first months of life."
Beutler and her husband, Daniel, got the devastating news during her second trimester, when they went in for what they thought would be a routine ultrasound.
That's when their doctor told them that the child they were expecting, their first, had a fatal condition, for which nothing could be done.
“It is the worst moment in your life,” Jaime recalled on NBC's TODAY show.
“He was looking at us, he was telling us 'your baby has no options.' It’s incompatible with life, it’s terminal. And at that moment, she was moving. She was moving in me, and he is telling me she’s not going to live,” she told Savannah Guthrie. “It was an amazing reality check.”
After a series of unusual prenatal treatments, the baby did survive: Abigail Rose Beutler was born prematurely on July 15, only 28 weeks into her development. Born without kidneys but now receiving peritoneal dialysis, she may be the first child with Potter’s Syndrome ever to survive the condition.
Abigail was born in an Oregon hospital but was quickly flown to California, where she has since remained in the care of physicians at Stanford University’s Lucile Packard Children’s Hospital.
"I don’t think there were any physicians who expected, based on her prenatal diagnosis, to ever reach that stage where she’s simply a growing preemie, breathing on her own, but requiring dialysis," said Dr. Louis Halamek, neonatologist at Packard Children's Hospital and a developmental medicine professor at the Stanford School of Medicine.
Abigail will need a kidney transplant in the year ahead, but her parents and doctors consider the child a miracle.
Babies with Potter’s Syndrome usually die shortly after their birth because of lung and kidney failure. A fetus diagnosed with the condition lacks amniotic fluid, which is crucial for lung and kidney development.
The Beutlers went to many doctors to no avail before finding one at Johns Hopkins Hospital in Baltimore who agreed to try an unusual treatment, in which Jaime was injected with saline solution over a series of weeks. The saline solution was injected in the womb to take the place of the missing amniotic fluid.
The treatments seemed to work. The baby began to develop normally.
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.
Jamie said that she was still doing her best to fulfill her duties as a federal legislator.
“While we ask for continued patience and prayers, particularly in the coming weeks as our family adjusts to life back home, my staff and I will continue serving the residents of Southwest Washington," Buetler said. "Like the millions of working mothers in this country, I will balance the responsibilities of my job with the needs of my family. I will travel to Washington, DC this week to vote on the federal budget compromise before the 2013 legislative session concludes.”