Published September 06, 2013
Doctors believe baby Abigail Beutler, the daughter of U.S. Rep. 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 Republican congresswoman from Washington was five months pregnant when she found out that her baby 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.
Herrera-Beutler described the moment she and her husband received the grim news.
“As the doctor was giving us the diagnosis (Abigail) was kicking,” she said. “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.’”
Refusing to give up on their daughter, the Beutlers found a doctor at Johns Hopkins in Baltimore, Md. who was willing to try an experimental treatment that could potentially 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. The couple then waited to see if the treatment would work – and miraculously, Abigail was born on July 15th.
“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.”
Doctors at Lucile Packard Children’s Hospital in California, where Abigail is currently being treated, say her weight has doubled since she was born, and she has “excellent lung function.”
According to Dr. Steven Alexander, a pediatric kidney specialist at Lucile Packard, Abigail will be on dialysis until she can get a kidney transplant in about a year or so, but he is confident about her prognosis.
“The kidney transplant success rate now is so good that we would predict a full adult life for her,” Alexander said.
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,” Dan Beutler said. “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.”
Herrera-Beutler says 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.