Against all odds, the eight-week-old daughter of Rep. Jaime Herrera Beutler, R-Wash., is alive, despite receiving a near-certain death sentence from doctors while still in the womb.
The first sign that there was something wrong with Abigail Rose Beutler appeared during a routine ultrasound in May of this year – a day Rep. Beutler’s husband, Daniel, told ABC’s “This Week” was the worst day of their lives. The technician could not locate Abigail’s kidneys.
“I could tell there was something kind of different – he just, he kind of went ashen, the ultrasound tech,” Rep. Beutler told ABC News’ David Wright.
The Beutler’s baby was diagnosed with Potter’s Syndrome, a condition caused by a critical lack of amniotic fluid which prevents the baby’s lungs and kidneys from forming properly. The condition is usually fatal, leading Rep. Beutler to release a statement saying, “There is no medical solution available to us. We are praying for a miracle.”
Despite the grim prognosis, Rep. Jamie Beutler said she could feel that something was different about her unborn baby.
“The doctor… he said, this is not compatible with life. And as he was saying it, I could feel her moving,” Rep. Beutler said.
“That is her personality. That’s what she does today,” said Beutler, only the fifth congresswoman to give birth while in office. “Her nurses are like, this little girl will tell us what she wants and does not want. She is such a fighter.”
Despite long odds, Abigail was born prematurely on July 15 with lungs strong enough to sustain life – thanks to an experimental treatment performed by a Johns Hopkins specialist in which saline was injected to replace the amniotic fluid, allowing the lungs to develop more fully than in most cases of Potter’s Syndrome.
“It’s unique in my experience for a baby to have the ultrasound picture this baby had and to be born with lungs that could support her,” said Dr. Steven Alexander, division chief of pediatric nephrology at the Lucile Packard Children’s Hospital at Stanford, who is now one of Abigail’s physicians.
Abigail will spend the next six months at the hospital, where she will receive daily dialysis until she can receive a kidney transplant.
For the Beutler’s, the joy is simply getting to call themselves parents.
“She knows who we are; she keeps responding and appears to get excited. She sleeps; she poos,” Rep. Beutler said. “We get to be parents, we get to experience her. We were told we weren’t going to get to, so every day is a blessing.”