U.S. Rep. Herrera Beutler announces birth of preemie daughter who is surviving, beating odds despite lack of kidneys

Posted by Brad Shannon on July 29, 2013 

Rep. Jaime Herrera Beutler and husband Daniel Beutler peer at infant Abigail Rose on July 23 at Lucile Packard Children's Hospital at Stanford University in California.

PHOTO BY LUCILE PACKARD HOSPITAL STAFF, COURTESY OF REP. HERRERA BEUTLER'S STAFF

Republican U.S. Rep. Jaime Herrera Beutler and husband Daniel Beutler made a delayed announcement Monday of the premature birth of her first child, Abigail Rose, on July 15 in Portland, Ore. The child, who was born without kidneys, has already beaten the odds by surviving two weeks and counting, the congresswoman’s office said today.

The Associated Press has a story on the birth of baby Abigail at Emanuel Legacy Hospital in Portland. The child is now being kept at Lucile Packard Children’s Hospital at Stanford University in Palo Alto, Calif.

Herrera Beutler’s media office said: “Abigail is considered by her doctors to likely be the first baby to survive a diagnosis previously considered fatal.” 

Herrera Beutler’s Facebook announcement is hereHerrera Beutler represents Washington’s 3rd Congressional District, which until redistricting took effect in January had included Olympia.

In a Monday message to reporters, Herrera Beutler’s media office said:

While in utero, Abigail was diagnosed with Potter's Syndrome, caused by bilateral renal agenesis. Potter's Syndrome is 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 anhydramnios, or a complete absence of amniotic fluid in the womb, which is critical to lung development. The condition often results in terminated pregnancy, as babies born with the condition suffer from pulmonary hypoplasia, or severely undeveloped lungs, and are unable to breathe once outside of the womb.

Upon receiving Abigail's diagnosis during the second trimester, Jaime and Daniel found a team of specialized physicians at The Johns Hopkins Hospital in Baltimore, Md. In their care, Jaime underwent serial amnioinfusion, a relatively uncommon treatment, in which a saline solution is injected into the womb in the place of amniotic fluid to facilitate development.

When delivered pre-term at 28-weeks' gestation in Portland, it is believed Abigail became the first baby on record with bilateral renal agenesis to breathe sustainably on her own.

"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," said Jaime and Daniel. "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. 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, Jaime went in to pre-term labor while at home in Washington state and Abigail was delivered four days later with fully developed lungs, indicating the serial amnioinfusion treatment had successfully mitigated the risk posed by anhydramnios in the womb. Without functioning kidneys, she was still critically at risk, however, and required immediate peritoneal dialysis under intensive care. At sixteen hours old, she made her first trip from Portland to Palo Alto, Calif., and with the recommendation of pediatric nephrologists at Johns Hopkins was placed under the care of an experienced team of specialized physicians at Lucile Packard Children's Hospital at Stanford University. She had surgery the next day and began dialysis immediately after.

"The first doctors we encountered told us that dialysis or transplant were not possible," said Jaime and Daniel. "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.'"

"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."

"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."

Abigail is currently active, stable and breathing on her own at Packard Children's. Though her doctors are uncertain what her future holds, she will require ongoing dialysis and 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," said Jaime and Daniel. "We owe a special thanks to Dr. Jessica Bienstock at Johns Hopkins, Dr. Fred Coleman at Legacy Salmon Creek Hospital, Dr. Anya Bailis at Legacy Clinic Maternal Fetal Medicine, and the entire team at Lucile Packard Children's Hospital. 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 Jaime and Daniel, The Johns Hopkins Hospital and Lucile Packard Children's Hospital, visit http://www.crosbyvolmer.com/jhbeutler/.

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