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More Information on Care of Jaime Herrera Beutler - 07/29/2013

More Information on Care of Jaime Herrera Beutler

In the hope of clarifying any questions about the congresswoman’s unique medical situation, Johns Hopkins Medicine is providing this additional information below.
Release Date: July 29, 2013

Congresswoman Jaime Herrera Beutler was referred to Johns Hopkins after her fetus was diagnosed with bilateral renal agenesis, which means that her child was developing without any kidneys. Inside a pregnant woman's uterus is an amniotic sac, which contains amniotic fluid and the growing fetus. The fluid helps keep the baby warm, provides lubrication to keep the baby’s body parts from growing together, and helps the lungs develop. After about 16 weeks of pregnancy, the fluid is made up of fetal urine. But if the fetus has no kidneys, it cannot make urine and there is no fluid. That was the case with Abigail.

The diagnosis has traditionally been considered a fatal one. Babies born with the condition suffer from pulmonary hypoplasia, which means their lungs have not developed, and they quickly suffocate, unable to breathe.

Herrera Beutler came to Johns Hopkins for a third opinion. To confirm the diagnosis by ultrasound, perinatologist Jessica Bienstock needed to put fluid into the sac by carefully infusing saline solution into the uterus in order to see. She saw what the others had seen — a baby without kidneys, with a deformed chest and head due to the lack of amniotic fluid.

The congresswoman was asked to return again in a week. This time, an ultrasound revealed that there was some fluid left and it appeared that the head and chest of the fetus were developing more normally and the baby was moving around actively. Herrera Beutler asked for another infusion. She and her doctor went over the many risks, including infection. Bienstock explained that the traditional teaching is that if there is no amniotic fluid between 16 and 22 weeks' gestation, the fetal lungs will not develop, there would be no hope for the baby, and once she was born she would almost certainly die.

However, given the fact that Herrera Beutler's fetus responded well to the first amnioinfusion, Bienstock agreed to proceed with a repeat amnioinfusion in the hope that the fetal lungs might develop. Bienstock performed the infusion that day, and it was done three more times over the course of the following several weeks, giving the lungs the chance to develop.

That Abigail has already survived two weeks is a medical marvel, and Bienstock says she is thrilled for her and her family. But Abigail was born under a set of unique circumstances. "I don’t know what the future holds for this little girl. We have helped her take the first few steps along a very long road," Bienstock says. Because she has no kidneys, the baby will require dialysis and an eventual transplant.

"This case is unprecedented," says Bienstock, a professor of maternal-fetal medicine in the Department of Gynecology and Obstetrics at the Johns Hopkins University School of Medicine. "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."

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