Before Rep. Jaime Herrera Beutler’s baby was even born, the odds seemed against her surviving. She hadn’t developed kidneys, which meant she didn’t produce urine which is the main ingredient of amniotic fluid. Without amniotic fluid, a baby’s lungs can’t develop properly.

But today, little Abigail Rose, who was born 10 weeks early on July 15, is surprising her doctors. She may be the very first baby with Potter’s Syndrome to survive, says Dr. Steven Alexander, one of Abigail’s physicians and a professor of pediatrics at Stanford school of medicine and chief of the division of pediatric nephrology and director of nephrology at the Lucile Packard Children’s Hospital at Stanford.

“She’s certainly one of a kind,” he says.

About one in every 4,000 fetuses has Potter’s syndrome, Alexander says. Until Abigail, none have survived to his knowledge.

Doctors don’t know why some babies, such as Abigail, don’t develop kidneys. Without amniotic fluid to fill up the sac, babies are literally squashed by the uterine walls, Alexander explains, adding that these babies generally end up with distorted skulls and club feet.

“The lethal part, though, is that they can’t develop lungs without fetal urine, which makes up two-thirds of the amniotic fluid,” Alexander says. “Not only does the amniotic fluid keep the lungs from being compressed, but it is also necessary for normal lung development. The baby inhales the fluid which expands the lungs like a water balloon.

When Abigail’s parents heard the heartbreaking diagnosis, they weren’t ready to give up. They sought a second, and then a third opinion – this one at Johns Hopkins Medical Center.

To confirm the baby’s diagnosis by ultrasound, perinatologist Dr. Jessica Bienstock had to inject fluid into the amniotic sac, according to a statement released by Hopkins. On the ultrasound, Bienstock saw the same thing the earlier doctors had seen: a baby without kidneys who had a deformed chest and head due to the lack of amniotic fluid.

 

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