Washington congresswoman’s baby first to survive without kidneys

Washington congresswoman’s baby first to survive without kidneys
Jaime Herrera Beutler with husband Daniel and baby Abigail. Courtesy Crosby-Volmer International Communications.

SEATTLE -- Washington State Rep. Jaime Herrera Beutler has given birth to the first baby known to have survived without kidneys. 

During the second trimester of Herrera Beutler’s pregnancy, doctors discovered that her daughter Abigail had little amniotic fluid, a condition known as Potter's Syndrome. Potters is typically caused when a baby is in kidney failure and stops producing urine, a primary source of amniotic fluid. But, both of Abigail’s kidneys had failed to develop at all. As a result, she was being compressed in the womb.

Potter’s Syndrome often results in a terminated pregnancy, as babies born with the condition suffer from severely undeveloped lungs and are unable to breathe outside the womb.

But, Herrera Beutler and husband Daniel instead sought the advice of specialized physicians at Johns Hopkins Hospital. In their care, Herrera Beutler underwent serial amnioinfusion, a rare treatment in which a saline solution is injected into the womb in the place of amniotic fluid to help the baby develop.

The initial lack of fluid in the womb caused pressure on Abigail’s head and chest; but over the course of the treatment Herrera Beutler and Daniel watched them reform to their proper size and shape. Her feet, which were clubbed in early ultrasounds, straightened.

"We found a group of courageous and hopeful doctors at Johns Hopkins who were willing to try a simple but unproven treatment," the parents said in a statement. "With each infusion, we watched via ultrasound as Abigail responded to the fluid by moving, swallowing and 'practice breathing.'”

Most babies with Potter’s die in utero, but Abigail was delivered July 15 in Portland at just 28 weeks and was able to breathe sustainably on her own.

“I do not know of a baby born without kidneys that has survived,” said  Dr. Louis Halamek, neonatologist at Packard Children's and professor of neonatal and developmental medicine at the Stanford School of Medicine. “I don’t know that were ever going to know why her outcome was so different.”

Halamek wonders if Abigail’s premature birth saved her life. 

“If she had gone on to full term, would her lungs have been able to keep up with the rest of her body?” he said. “Her premature birth may have allowed her a chance at survival, but that’s pure conjecture.”

Despite having well-developed, functioning lungs, Abigail still needed immediate peritoneal dialysis after she was born. At 16 hours old, she was taken to Lucile Packard Children's Hospital at Stanford University.

"The first doctors we encountered told us that dialysis or transplant were not possible," the parents said. "No local hospital was prepared to perform peritoneal dialysis on a baby so small. After a day of searching, we found a team at Lucile Packard Children's Hospital who were happy to have her."

Despite Abigail's prematurity and life-threatening condition, Halamek said she is doing well. She is currently active, stable and breathing on her own. She has no neurological concerns and has avoided many of the concerns more typical premature babies face, including infection and bleeding in the brain.

“As I think about her as a whole little girl, she’s actually been very easy to take care of,” Halamek said.

Abigail will require ongoing dialysis until she is about 1 year old and can have a kidney transplant.

“Mom and dad know that this is the start of a long road for her, but we are very hopeful that she will survive long term and will hopefully lead a very happy and healthy childhood and adulthood,” Halamek said.

While the Beutler case may inspire future research, it is unknown whether serial amnioinfusion might save other babies with Potter’s Syndrome.

"It would be premature to say bilateral renal agenesis should always be treated using serial amnioinfusion,” said Dr. Jessica Bienstock, a professor of maternal-fetal medicine at the Johns Hopkins University School of Medicine who led the team that performed the serial amnioinfusions. “So far this is just one isolated case whose ultimate outcome is still unknown."

Meanwhile, the Beutler’s are thankful to those who never gave up on their daughter.

"We are grateful to the doctors and nurses in Baltimore, Vancouver, Portland and California who, like us, were not willing to accept the fatal diagnosis, but were willing to fight for the impossible," the parents said. "We are grateful to the thousands who joined us in praying for a miracle. But, most of all, we are grateful to God for hearing those prayers."