By Saying Yes, Stanford Children’s Helps Newborn With Fatal Kidney Diagnosis Survive

Ten years ago, Abigail Beutler was born without kidneys. Against all odds, she’s alive today to play with her Breyer horses, read her favorite Paul Revere adventure book, and challenge her brother in archery.

The family was told they had no options, no hope. But first-time parents Jaime Herrera Beutler and Dan Beutler refused to give up.

“Abigail was alive and kicking. Everything seemed normal. She was ours and we wanted her,” says Jaime.

The couple embarked on a relentless pursuit to find care for Abigail, guided by their strong faith. The first hurdle was locating a doctor and hospital willing to care for Jaime while she was pregnant. Normally, a developing baby’s kidneys make urine, which creates amniotic fluid. When a fetus has underdeveloped or missing kidneys, amniotic fluid can run dangerously low. Without adequate amniotic fluid, the baby’s lungs can’t grow.

“Abigail had bilateral renal agenesis—meaning her kidneys never developed—which is considered fatal,” says Paul Grimm, MD, a nephrologist with Stanford Medicine Children’s Health. “The couple was advised to end the pregnancy, because the medical community at the time didn’t think it was possible to offer a child who was born without kidneys a shot at life.”

To maintain her amniotic fluid during pregnancy, Jaime needed repeated, consistent infusions of fluid into her uterus to help Abigail survive. In other words, she needed amnioinfusions, which at the time were experimental, unproven, and not without risk to the mother and the baby.

“We were told no at every turn,” Jaime says—until, finally, a top hospital on the East Coast said yes. Jaime was able to coordinate work trips to receive regular amnioinfusions. However, when Abigail was born at just 28 weeks in Portland, Oregon, the family needed a closer hospital that was willing to treat her.

“The second big hurdle was finding a hospital on the West Coast that was capable of providing dialysis to a newborn,” Jaime says.

Stanford Children’s says yes to newborn dialysis

Dialysis does the job of the kidneys, and without kidneys, Abigail needed dialysis soon after birth to survive.

“After delivery, the clock was ticking, and we had to get her somewhere fast. We reached Steven Alexander, MD, a nephrologist at Stanford Children’s. He said, while they performed peritoneal dialysis on newborns, they had never provided it to a child so premature and small, but he said they would try,” Jaime says. “I loved the positive attitude of yes, we’ll take her. And if we don’t try this, who will?”

While dialysis—a machine that filters blood—is common and fairly straightforward for adults, dialysis for premature newborns is not. Newborns require nonstop peritoneal (in the abdomen) dialysis that ultra-filters the blood.

Today, Stanford Children’s Health’s innovative NephroNICU program is one of a handful of places in the nation to offer the latest neonatal dialysis technologies, including aquapheresis. The program uses this FDA-approved device in a novel, modified way to lower risk and increase benefits for the smallest babies, along with other technologies to accommodate babies of all sizes.

“Today, we are pushing the boundaries of conventional wisdom about how small a baby can be to receive neonatal dialysis,” says Alexis Davis, MD, a neonatologist.

Baby Abigail enters the world against all odds

Abigail was born at 28 weeks, weighing less than 3 pounds, on July 15, 2013. She and her mom were quickly transported to Stanford Children’s, and her dad followed close behind. A large, multispecialty team of nephrologists (kidney doctors), dialysis specialists, and neonatologists were ready in the advanced Neonatal Intensive Care Unit (NICU) to greet them.

“She looked perfect. You couldn’t tell anything was wrong with her. She was just really small,” Dr. Alexander says. “Because Jaime had amnioinfusions, Abigail’s lungs were nicely developed.”

Abigail wasn’t the first baby born without working kidneys to receive specialized neonatal peritoneal dialysis at Stanford Children’s, but she was one of the smallest.

“She was strikingly small but incredibly vigorous. She was our first baby with bilateral agenesis, but with our expertise we were hopeful we could offer her a chance to live. Our multispecialty team came together very quickly to assess what she needed and initiate care,” says Cynthia Wong, MD, director of Pediatric Dialysis.

Abigail was started on peritoneal dialysis, and for her size that meant nurses had to provide dialysis manually, exchanging fluids every half hour around the clock.

“NICU nurses are the Navy SEALs of nursing,” Dan says. “All the nurses understood dialysis, and they worked so closely with the doctors. That is the secret sauce of Stanford.”

Abigail’s absent kidneys were part of a larger condition, called Potter syndrome. She is believed to be the first child ever born with Potter syndrome to survive.

The beginnings of the NephroNICU program at Stanford Children’s

Dr. Davis recalls the exact space the Beutlers inhabited in the NICU—room 4B. She remembers being amazed that Abigail didn’t need breathing support.

“Abigail’s success became a sentinel event in maternal-fetal medicine and neonatology to challenge what we previously thought about the prognosis of Potter syndrome. It sparked us to offer dialysis to more small babies and to participate in a clinical trial on amnioinfusions,” Dr. Davis says.

Abigail played a large role in the formal launch of the NephroNICU program at Stanford Children’s—niche care for fetuses and newborns with severe kidney problems. She showed that small babies could survive with neonatal peritoneal dialysis. She pushed the limits on age and weight cutoffs for premature babies and prompted the team to explore innovative methods for providing dialysis support to babies smaller than she was.

“The NephroNICU program was a dream 10 years ago at Stanford Children’s. Today, it is widely considered a destination center for infants who need dialysis,” Dr. Alexander says.

Stanford Children’s Health’s NephroNICU offers babies a chance at survival by providing innovative care in the womb—in partnership with our Fetal and Pregnancy Health Program—and multispecialty, tailored care, including pediatric dialysis, neonatal care, kidney care, anesthesiology, and kidney transplant after birth, along with interventional radiology to skillfully adapt dialysis catheters for very small babies.

“Other centers can provide newborn dialysis, but what makes us unique is how we all collaborate,” Dr. Wong says. “Caring for these babies can only be successful with comprehensive and closely coordinated care.”

While kidney doctors focus on the baby’s kidney function, neonatologists and the entire NICU team of specialized nurses, dietitians, and developmental and rehabilitation therapists provide vital care for the whole baby, ensuring that all organs remain healthy and that a baby will not just survive, but grow and thrive.

After her successful launch into life and months of healing care at Stanford Children’s, Abigail eventually was able to receive home dialysis from her parents.

“The first night alone was scary, but deep down we knew we had learned everything we needed from being a part of the NICU team’s care, day in and day out,” Dan says. “They taught us the art, not just the science, of providing dialysis.”

Abigail served as an inspiration for doctors as they formed the NephroNICU program at Stanford Children’s. Today, the program cares for a steady stream of babies like Abigail.

The final hurdle—a kidney transplant

Abigail couldn’t live on dialysis forever. To thrive, she needed a real kidney, and that meant a kidney transplant. At 2 and a half years of age, Abigail was ready to receive her kidney transplant. Dan didn’t hesitate to provide one of his kidneys, and the couple didn’t hesitate to return to Stanford Children’s for the transplant.

“We knew Stanford Children’s had done more kidney and liver transplants than most other hospitals in the country, so it made sense to return; plus, we had developed trust in the doctors and their standard of excellence in care,” Dan says.

“The personal investment and love that the nurses, doctors, and surgeons gave us was such a beautiful thing,” Jaime adds.

The kidney transplant team recognized how precious the situation was—to hold the lives and health of two people from the same family in their hands. The kidney transplant surgeons at Stanford Children’s remained intimately involved in Abigail’s care well before and beyond the transplant, providing care and guidance during dialysis, performing the transplant, and following up with assessments afterward—a practice that is distinctive, yet typical, of Stanford Medicine Children’s Health.

“A part of the reason I love my job is because I get to become friends with patient families and see them through a challenging time,” says Amy Gallo, MD, transplant surgeon. “Abigail’s parents were such strong advocates for her and ringleaders in bringing this care to the forefront.”

Kidney transplants are performed at Stanford Children’s when a baby reaches 22 pounds. It takes a whole multispecialty team to ready a baby like Abigail for transplant. The Pediatric Kidney Transplant Program has performed more pediatric kidney transplants than anywhere else in the West, and its one-year and three-year survival rates are unsurpassed at 100%.

The team’s collective efforts paid off. Abigail’s kidney transplant was a success.

Paving the way for others to follow

Because Abigail’s case made news headlines, Jaime and Dan took on the role of advocates for babies born without kidneys. Abigail’s story is widely known and easily found by families searching for answers. She’s the face of hope.

“Jaime has made herself accessible to strangers in crisis. She provides them with reassurance and courage to embark on a path that isn’t easy or without complications, but with hope of a potential good outcome,” Dr. Davis says.

Even today, the family takes calls from parents in their shoes and advocates at the state and national levels for more access to care for babies like Abigail. Because this care is still cutting-edge, many families hear no more often than yes.

“We feel like it’s our responsibility to empower parents and share our experience as they encounter obstacles while fighting for their child,” Dan says.

For parents who learn they are carrying a baby with serious kidney problems, there are no guarantees, and it can be an arduous, long road. Stanford Children’s is here for families who choose to pursue care.

“We support families in what they believe is the right path for them,” Dr. Grimm says. “We’re here for families who want to give their child a chance, but we are very clear about the risks and challenges. We root for these babies, and we do our very best to help them survive and thrive.”

Abigail is doing just that. She recently celebrated her 10th birthday, and her latest kidney check showed that she is in excellent health.

“We will be forever grateful to Stanford Children’s for saying yes,” Jaime says. “Abigail is relentless and tremendously strong-willed. I love that she is a groundbreaker, and I know she will blaze trails wherever she goes.”

Learn more about our fetal care and newborn care for babies born with congenital kidney defects.