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Baby born with no kidneys celebrates first Christmas outside of NICU

Posted at 5:24 PM, Dec 24, 2019
and last updated 2019-12-25 13:06:00-05

SAN DIEGO, Calif. -- Heidi Chrisman has walked through the Rady Children's Hospital Level 4 NICU more times than she can count. It's reserved for the most critically ill newborns, and her daughter Evelyn was there for nearly five months.

"We were at our 18-week appointment, and the doctor said that they couldn't find any kidneys or bladder," remembered Heidi. "It was heartbreaking. I think me and my husband were in a daze for weeks."

Her daughter has a rare condition called bilateral renal agenesis. It's typically fatal because without functioning kidneys, the fetus' lungs do not fully develop.

Heidi says the condition is usually genetic, but tests showed that's not the case for her daughter.

"That doctor basically said you've got three options, wait out the pregnancy, and you'll maybe get a half-hour to a couple of hours with her before she passes, or we can terminate the pregnancy now."

But the third option was infusing a saline solution into the amniotic sac to allow the lungs to develop throughout the pregnancy. The hope then is after birth, the baby can undergo dialysis and, ultimately, kidney transplantation.

Heidi's husband is in the Navy, and during the pregnancy, he was stationed in Florida.

"It was very difficult, but we knew that the best care was here in San Diego," said Heidi.

She moved to San Diego, where she has family, and began the infusions.

"They had no idea whether that would work," said Heidi.

But when Evelyn was born, she showed off her healthy lungs with a loud scream.

"I'm holding a miracle in my hands."

Evelyn undergoes dialysis 13 hours each day, which will continue until she's able to get a kidney.

She's about 15 pounds now and will need to grow to 22 pounds for a kidney transplant, which will come from an adult.

Their Rady Pediatric Nephrologist, Nadine Benador, has only seen three of these cases in her 20 years of practice.

Benador says 1 in 10,000 babies have the condition.

"She's here, and she wasn't supposed to be, and it's just amazing," said Heidi.

Another gift for the family this year, Heidi's husband is now stationed in San Diego.

This story was originally published by Amanda Brandeis at KGTV.