POLITICS
07/29/2013 01:46 pm ET | Updated Jul 29, 2013

Jaime Herrera Beutler, GOP Congresswoman, Gives Birth To First Known Survivor Of Potter's Syndrome

AP

Rep. Jaime Herrera Beutler (R-Wash.), and her husband Daniel Beutler, on Monday announced the birth of their first child -- a baby girl that doctors say is likely the first known survivor of a rare pre-natal condition that is almost always fatal.

In May, Herrera Beutler announced that she was pregnant. Days later, she released devastating news, saying that her unborn child had been diagnosed with Potter's Syndrome, or bilateral renal agenesis. She said the condition is identified by "abnormally low amniotic fluid caused by impaired kidney function which inhibits normal lung development and is often fatal."

After extensive treatment at The Johns Hopkins Hospital in Baltimore, Md., Abigail Rose Beutler was born in Portland, Ore. on Monday, July 15 at 3:13 a.m., delivered pre-term at 28-weeks. She has no kidneys, but has fully developed lungs, which doctors considered a sign that their injections of saline solution into Herrera Beutler's womb in place of amniotic fluid had been successful.

Herrera Beutler and her husband explained the medical procedure in a release.

"Through the outreach of a parent who had faced a similar situation, we found a group of courageous and hopeful doctors at Johns Hopkins who were willing to try a simple, but unproven treatment by amnioinfusion," they said. "Every week for five weeks, doctors injected saline into the womb to give Abigail's lungs a chance to develop. With each infusion we watched via ultrasound as Abigail responded to the fluid by moving, swallowing and 'practice breathing.' The initial lack of fluid in the womb caused pressure on her head and chest, but over the course of the treatment we were able to watch them reform to their proper size and shape. Her feet, which were clubbed in early ultrasounds, straightened. There was no way to know if this treatment would be effective or to track lung development, but with hearts full of hope, we put our trust in the Lord and continued to pray for a miracle."

Shortly after her birth, Herrera Beutler's baby was placed under the care of an experienced team of specialized physicians at Lucile Packard Children's Hospital at Stanford University. She is currently active, stable and breathing on her own, but will require ongoing dialysis and will eventually need a kidney transplant. In the meantime, doctors have expressed optimism in the groundbreaking treatment's effect.

"Despite Abigail’s prematurity, small size and life-threatening disease, she is doing well," said Dr. Louis Halamek, neonatologist at Packard Children’s and professor of neonatal and developmental medicine at the Stanford School of Medicine. "Together with our colleagues in pediatric nephrology, we are cautiously optimistic about her future."

"This case is unprecedented," said Dr. Jessica Bienstock, a professor of maternal-fetal medicine in the Department of Gynecology and Obstetrics at the Johns Hopkins University School of Medicine who led the Hopkins team that performed the serial amnioinfusions. "It would be premature to say bilateral renal agenesis should always be treated using serial amnioinfusion, but this suggests it can be part of the conversation when that is the diagnosis. Hopefully science will evolve to the point where we will be able to save babies with this defect. But so far this is just one isolated case whose ultimate outcome is still unknown."

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