Eight weeks ago,  Rep. Jaime Herrera-Beutler of Washington state gave birth to daughter, Abigail Rose. The baby continues to be in stable condition despite the fact she was born without kidneys, and a rare, typically fatal condition.

Jaime Herrera-Butler Abigail Potter Syndrome

Jaime said she and her husband learned about the baby’s abnormality during a routine ultrasound back in May. “I could tell there was something kind of different, he [the ultrasound tech] just went ashen,” Jaime explained. After being unable to locate the baby’s kidneys on ultrasound, doctors delivered the heartbreaking news to the Beutlers. Baby Abigail was diagnosed with Potter’s Syndrome, a condition so rare, it only occurs in one in 60,000 pregnancies. Potter’s Syndrome is caused by a lack of amniotic fluid in the womb, keeping the kidneys and liver from forming properly.

The diagnosis is almost always fatal. Parents are given the grim statistics and then doctors discuss the option to terminate the pregnancy because Potter’s Syndrome babies are not able to breath on their own outside the womb. The Beutlers were also given this option but declined. The doctor said, “She [Abigail] is not compatible with life. She’s not gonna live,” Jaime remembers. “And as he was saying it, I could feel her moving.” Shaken but undeterred, the Beutlers researched the condition and found a small glimmer of hope at Johns Hopkins University.

Under the prenatal care of specialists at Johns Hopkins, Jaime was given serial amnioinfusions, a rare treatment where saline is injected into the womb to mimic amniotic fluid. The cutting edge procedure initially caused pressure on the baby’s head and chest, and even temporarily caused her feet to “club” but with each injection, the parents watched on ultrasound as she responded to the fluid by moving and even swallowing. Her head and chest eventually reformed, and her feet straightened out, as well. Though she was born prematurely at just 28 weeks, Abigail’s lungs were fully functioning allowing her to breath on her own. She is the first baby born in the United States with Potter’s Syndrome who has been able to do so.

Today, baby Abigail remains in the neonatal intensive care unit at Lucile Packard Children’s Hospital where she will spend the next six months of life. She is undergoing daily kidney dialysis and will eventually need a transplant, but her future prognosis is good. “Mom and dad know that this is the start of a long road for her,” said Dr. Louis Halamek, neonatologist at Packard Children’s and professor of neonatal and developmental medicine at the Stanford School of Medicine, “but we are very hopeful that she will survive long term and will hopefully lead a very happy and healthy childhood and adulthood.”

Representative Herrera-Beutler will be headed back to Congress soon to vote on the possible military strike in Syria but proud dad, Daniel will be right there by Abigail’s side until the family can be together again.