A choked-up House Speaker John Boehner prompted two bipartisan standing ovations July 23 when he praised a doctor who helped a fellow lawmaker’s infant survive a rare fetal condition.
Lawmakers reacted warmly after Boehner, R-Ohio, interrupted a vote on education legislation to recognize Rep. Jaime Herrera Beutler, R-Wash. The 35-year-old lawmaker stood up, holding and hugging her 1-year-old daughter, Abigail Rose. He then introduced Dr. Jessica Bienstock, who specializes in high-risk pregnancies at Johns Hopkins University and was in the chamber visitors’ gallery.
“If [Abigail’s] a happy, healthy miracle, Dr. Bienstock is the miracle worker who helped give the gift of help and life to this family,” Boehner said.
While in the womb, Abigail was diagnosed with Potter’s Sequence, a rare disorder that causes deficient amniotic fluid due to failing or, in Abigail’s case, non-existent kidneys. Low amniotic fluid levels meant that Abigail’s lungs weren’t developing properly, a grim prognosis that usually causes babies to suffocate after birth. Following the diagnosis of the fatal condition, Beutler released a heart-wrenching statement: “There is no medical solution available to us. We are praying for a miracle.”
But the Beutlers began to hope when a friend who faced a similar situation recommended they investigate an unproven treatment called amnioinfusion offered by Bienstock in Baltimore, Md. Beutler underwent five amniotic fluid injections. “With each infusion we watched via ultrasound as Abigail responded to the fluid by moving, swallowing, and ‘practice breathing,’” Beutler said. Abigail’s head and chest began to form properly and her club feet straightened as the Beutlers continued to pray that her lungs would develop as well.
In July at a Portland hospital, Beutler gave birth to a breathing, crying, 28-week-old Abigail, the only baby diagnosed with Potter’s Sequence known to breathe sustainably on her own. She was born without kidneys and spent her first five months in intensive care at Lucile Packard Children’s Hospital at Stanford University. She is currently on dialysis and will need a transplant.
“This case is unprecedented,” Bienstock said shortly after Abigail’s birth. “It would be premature to say bilateral renal agenesis [Potter’s Sequence] should always be treated using serial amnioinfusion, but this suggests it can be part of the conversation. Hopefully science will evolve to the point where we will be able to save babies with this defect.”
Beutler expects her baby to continue to surmount her challenges and live a full and healthy life. “She’s playing. She will scream when her diaper is dirty. She is like any other baby,” Beutler told the Today Show in September. “She has a few challenges, but man, she’s determined.”