'Miracle Baby' Survives Deadly Potter Syndrome, Awes Medical Community

(Photos courtesy of Lucile Packard Children’s Hospital)

Doctors believe Baby Abigail Beutler, the daughter of Republican Congresswoman Jaime Herrera-Beutler and her husband Dan, may be the first baby ever to survive Potter's Syndrome, a prenatal condition affecting the development of a baby’s lungs.

The Congresswoman was five months pregnant when she found out that Baby Abigail had no kidneys, and therefore was producing no fetal urine. Doctors say that leads to little-or-no amniotic fluid, which ultimately prevents the lungs from developing.

“As the doctor was giving us the diagnosis,” Congresswoman Herrera-Beutler recalls, “she (Abigail) was kicking. We're totally broken, we're sobbing, we're asking, “What can be done? Is there anything that can be done?” And she's moving inside of me and the doctor is saying, 'No, there is no option, this is fatal.'”

But the Beutlers found a doctor at Johns Hopkins in Baltimore, MD who was willing to try an experimental treatment to try to save Abigail’s life.

The doctor injected multiple doses of a saline solution into the Congresswoman's abdomen to try to create enough fluid for the lungs to develop. And then they waited to see if it would work. Abigail was born July 15th.

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“When she came out and everybody was quiet, I think … a lot of these medical professionals were prepared for the worst and she looked at us and she cried which means her lungs were functioning,” said Congresswoman Herrera-Beutler. “I think that cry kind of startled everybody in the room and there was a bustle of activity; she was breathing room air which is a miracle.”

Doctors at Lucile Packard Children’s Hospital in California, who are treating Abigail, said her weight has doubled and she has “excellent lung function,” according to pediatric kidney specialist, Dr. Steven Alexander.

Dr. Alexander said Abigail will be on dialysis until she can get a kidney transplant in about a year or so, and that “the kidney transplant success rate now is so good that we would predict a full adult life for her.”

The Beutlers are going public with their story because they want other families that get a diagnosis of Potter’s Syndrome to have some hope.

“Our daughter had a 100-percent fatal diagnosis, and she'll be 8 weeks on Monday. We and many people around the country have spent a lot of time praying for her. we don't know exactly how it all worked out, but we know for sure she's a miracle,” said Dan Beutler.

Congresswoman Herrera-Beutler said she has received a lot of support from her Congressional colleagues during this time, including a call from House Speaker John Boehner and a note from Minority Leader Nancy Pelosi.