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Kylie McConville

Amazing! Baby Could Be The First To Survive Potter’s Syndrome

PUBLISHED ON 09/09/2013

Doctors in Washington state gave mom-to-be (and congresswoman from Washington) Jaime Herrera-Beutler and her husband, Dan, a grim diagnosis when the United States Representative was five months pregnant with her first child. In a very candid interview with the TODAY show, Herrera-Beutler says that she was at a check up when she found out her baby had no kidneys and was not producing fetal urine, causing little to no amniotic fluid and preventing Abigail's (the name they'd chosen for their daughter) lungs from developing — a condition known as Potter's Syndrome.

Potter's Syndrome is one of several serious or fatal kidney abnormalities in which the baby's kidneys do not develop in the first few weeks of life in the womb.  The baby's kidneys are essential for the production of amniotic fluid in the womb.  If there are no kidneys, there is little or no amniotic fluid (this is known as oligohydramnios) to expand the womb around the baby and to allow the baby to grow and move.  The womb remains small and in its confined space the baby's lungs cannot develop properly. Many babies with Potter's syndrome are stillborn. In those who are born alive, the immediate cause of death is failure to breathe (respiratory failure) due to underdeveloped (hypoplastic) lungs, usually one or two days after delivery. Even if this problem is treated the baby cannot survive without kidneys. Potter's syndrome is also known as Renal Agenesis, which simply means that the kidneys did not develop.

In her interview, she recounted the moment that she and her husband received the heart-stopping 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.'" But while the doctor's diagnosis was grim, Jaime and Dan refused to give up. They found a doctor at Johns Hopkins in Baltimore, Maryland who was willing to try an experimental treatment on the baby that had the potential to save her life.

The doctor injected multiple doses of a saline solution into Jaime's abdomen to try and create enough fluid for the baby's lungs to develop. After the injections had been administered, the parents-to-be waited to see if the experimental procedure worked. To the shock and surprise of many, Abigail was born on July 15. Jaime told, "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. I think that cry kind of startled everybody in the room."

Now, doctors at the Lucile Packard Children's Hospital in California, where Abigail is being treated, proudly note that her weight has doubled since her birth on July 15 — and baby girl has "excellent lung function." Dr. Steven Alexander, a pediatric kidney specialist at the hospital noted that thought Abigail will remain on dialysis until she has a kidney transplant — which would take place a year from now — he is confident about her prognosis. He told Fox, "The kidney transplant success rate now is so good that we would predict a full adult life for her."

Following Abigail's positive prognosis, the Beutler family decided to go public with their story in the hopes that it would help bring more awareness to Potter's Syndrome and encourage families who've had children with Potter's Syndrome to have hope. “Our daughter had a 100 percent fatal diagnosis," said Dan Beutler, "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.”

Does this story give you hope for a cure?