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Baby born with rare, often-fatal kidney disease "doing well" at Packard Children's Hospital

Potter's syndrome family

You may have read in the news about the birth of Abigail Rose Beutler, the daughter of U.S. Congresswoman Jaime Herrera Beutler and her husband. Abigail has quite the story: She was diagnosed with Potter's Syndrome, a rare and usually fatal disease that left her without functioning kidneys, and treated at Johns Hopkins Hospital even before she was born two weeks ago. ("This case is unprecedented," said a doctor there.) When she was 16 hours old, Abigail was taken to Lucile Packard Children's Hospital for care, and she had surgery and began dialysis the next day.

Abigal's parents announced her birth today, and her Packard doctors say the little patient is "doing well," and "active, stable and breathing on her own." More from a hospital statement:

Over the past year alone, Packard Children’s has begun dialysis in six babies with irreversible renal failure during the first month of life, two of them low-birth-weight babies like Abigail. “It’s the collaborative experience of our neonatology and nephrology teams that allows us to offer this therapy for babies who have end-stage renal failure,” said Steven Alexander, MD, chief of pediatric nephrology at Packard Children’s and professor of nephrology at the Stanford School of Medicine.

Alexander said the goal is to eventually support these babies on a modified version of continuous peritoneal dialysis at home that will be mostly provided by their families. “This therapy would continue until they grow large enough to receive a kidney transplant from an adult donor at about 12 to 14 months of age,” Alexander explained. “Outcomes overall with this integrated therapy for newborns have been quite good.”

Photo courtesy of Packard Children's Hospital

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