Facing long odds after a heartbreaking prenatal diagnosis, Rep. Jaime Herrera Beutler has announced the birth of her daughter, Abigail Rose Beutler, who suffers from a rare medical condition known as Potter’s syndrome.
“With great joy, gratitude and hope, we are pleased to share with you the news of the birth of our daughter, Abigail Rose Beutler,” Hererra Beutler, R-Wash., wrote on her Facebook page today. “She is every bit a miracle.”
The baby was born July 15 about two months premature. She weighed 2 pounds, 12 ounces at birth. She is now two weeks old so the congresswoman decided to share the news on her Facebook page.
“Although Abigail will need ongoing care after she comes home, we have every expectation that she will lead a full and healthy life,” Beutler, 34, wrote in the post. “We are grateful to the thousands who joined us in praying for a miracle. But most of all, we are grateful to God for answering those prayers.”
The congresswoman announced in early June that her baby suffered from Potter’s, which is often fatal and occurs when the levels of amniotic fluid surrounding the fetus are insufficient, leading to underdeveloped lungs. Its kidneys fail to develop properly, a condition known as bilateral renal agenesis.
“There is no medical solution available to us,” she and her husband wrote at the time of the diagnosis. “We are praying for a miracle.”
Facing the likelihood of delivering a stillborn baby, the couple decided to move ahead with unproven treatment by amnioinfusion at Johns Hopkins Hospital in Baltimore. Every week for five weeks, doctors injected saline into the womb to give the infant’s lungs a chance to develop.
A day after the fifth infusion, the congresswoman went into preterm labor. After four days of trying to prevent preterm delivery, the baby arrived.
“The doctors and nurses were prepared for the worst, but immediately after she was born, she drew a breath and cried,” Herrera Beutler said. “After a few minutes, it was clear that her lungs were very well developed for a baby born so early. The infusions had stopped the Potter’s Sequence.”
But the baby will need regular dialysis treatment and a future kidney transplant because she has no kidneys.
The incidence of Potter’s syndrome is said to be somewhere between 1 in 2,000 and 1 and 5,000, with the average suggesting an occurrence rate of about 1 in 4,000 total births, according to potterssyndrome.org.
The congresswoman becomes just the fifth woman to give birth to a child while serving in Congress. She and her husband believe their daughter is the first baby with bilateral renal agenesis to breathe sustainably on her own.
News of the congresswoman’s achievement drew warm wishes from her colleagues in the House of Representatives.
“Praying for baby Abigail Rose Beutler and saluting the courage of her parents, Jaime @HerreraBeutler and Dan,” House Speaker John Boehner, @SpeakerBoehner, tweeted.
As for Herrera Beutler, her Facebook post states “she is doing well, caring for her precious little daughter and recovering.”