Congresswoman Jaime Herrera Beutler delivered her baby earlier this month, and doctors are considering the baby to likely be the first to survive a diagnosis previously considered fatal.
Herrera Beutler and her husband, Daniel Beutler, welcomed their daughter, Abigail Rose Beutler, at 3:13 a.m. July 15 at Legacy Emanuel Medical Center in Portland. Abigail weighed 2 pounds 12 ounces at birth.
While in utero, Abigail was diagnosed with Potter’s Syndrome, a condition associated with a deficiency in amniotic fluid often caused by a baby’s prenatal kidney failure. In Abigail’s case, absence of the kidneys resulted in a complete absence of amniotic fluid in the womb, which is critical to lung development, according to a news release from Herrera Beutler’s office.
Babies born with the condition typically suffer from severely underdeveloped lungs and are unable to breathe once outside of the womb.
Multiple doctors told Herrera Beutler and her husband that, based on medical evidence, Abigail’s condition was incompatible with life and if she survived to term, she would be unable to breathe and live only moments after birth.
“The options we were offered were termination or ‘expectant management,’ that is, waiting for her to die,” Herrera Beutler said in a Facebook announcement. “Instead, we chose to pray earnestly for a miracle.”
Delivered pre-term at 28-weeks gestation — full term pregnancy is 38 to 40 weeks — Abigail is believed to be the first baby on record with the condition to breathe sustainably on her own, according to the news release.
Herrera Beutler, 34, received the diagnosis during her second trimester of pregnancy. Upon learning the news, she and her husband found a team of specialized physicians at The Johns Hopkins Hospital in Baltimore. There, Herrera Beutler underwent serial amnioinfusion, a relatively uncommon treatment in which a saline solution is injected into the womb in the place of amniotic fluid.
“Through the outreach of a parent who had faced a similar situation, we found a group of courageous and hopeful doctors at Johns Hopkins who were willing to try a simple, but unproven treatment by amnioinfusion,” Herrera Beutler and her husband said in the news release.
“Every week for five weeks, doctors injected saline into the womb to give Abigail’s lungs a chance to develop. With each infusion we watched via ultrasound as Abigail responded to the fluid by moving, swallowing and ‘practice breathing.’ The initial lack of fluid in the womb caused pressure on her head and chest, but over the course of the treatment we were able to watch them reform to their proper size and shape. Her feet, which were clubbed in early ultrasounds, straightened,” they said. “There was no way to know if this treatment would be effective or to track lung development, but with hearts full of hope, we put our trust in the Lord and continued to pray for a miracle.”
After the fifth infusion, Herrera Beutler went into pre-term labor while at home in Washington. Abigail was delivered four days later with fully developed lungs, according to the news release.
Without functioning kidneys, Abigail was still critically at risk, however, and required immediate peritoneal dialysis under intensive care. At 16 hours old, Abigail was transported to Lucile Packard Children’s Hospital at Stanford University in Palo Alto, Calif. She had surgery the next day and began dialysis immediately after, according to the news release.
“The first doctors we encountered told us that dialysis or transplant were not possible,” Herrera Beutler and her husband said. “No local hospital was prepared to perform the procedure necessary — peritoneal dialysis — on a baby so small. Johns Hopkins was willing, but too far to transport. After a day of searching, we found a team at Lucile Packard Children’s Hospital who were ‘happy to have her.’ ”
“This case is unprecedented,” said Dr. Jessica Bienstock, a professor of maternal-fetal medicine in the Department of Gynecology and Obstetrics at the Johns Hopkins University School of Medicine who led the Hopkins team that performed the serial amnioinfusions. “It would be premature to say bilateral renal agenesis should always be treated using serial amnioinfusion, but this suggests it can be part of the conversation when that is the diagnosis. Hopefully science will evolve to the point where we will be able to save babies with this defect. But so far this is just one isolated case whose ultimate outcome is still unknown.”
“Despite Abigail’s prematurity, small size and life-threatening disease, she is doing well,” said Dr. Louis Halamek, neonatologist at Packard Children’s and professor of neonatal and developmental medicine at the Stanford School of Medicine. “Together with our colleagues in pediatric nephrology, we are cautiously optimistic about her future.”
Abigail is currently active, stable and breathing on her own at Lucile Packard Children’s Hospital. Abigail will require ongoing dialysis and an eventual transplant.
“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,” Herrera Beutler and her husband 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.”
For more information on Abigail’s specific case, to access photos of the family at Packard Children’s or to see full statements from Herrera Beutler and Buetler, The Johns Hopkins Hospital and Lucile Packard Children’s Hospital, visit http://www.crosbyvolmer.com/jhbeutler.