Genevieve was born with a rare condition called congenital chylothorax. She was hydroptic, collecting fluid in her body tissues and around her lungs.
Genevieve was born with a rare condition called congenital chylothorax.
“The miracle on 42nd Street,” is how Genevieve Wright’s family describes their strong, resilient little girl.
On February 19th, Genevieve was born at Nebraska Medicine – Nebraska Medical Center with a rare condition called severe congenital chylothorax. She was hydroptic, collecting fluid in her body tissues and around her lungs. Only two percent of babies born with this condition survive. Most die inside the womb, or moments after birth.
“We’ve done a lot of crying and praying,” says Genevieve’s mom, Shelly Wright. “Genevieve has been in the fight of her life.”
Shelly Wright enjoys cuddling with her 2-month-old daughter, Genevieve.
Over the last two months, Ann Anderson-Berry, MD, medical director of the NICU, inserted 14 chest tubes to drain the fluids from Genevieve’s body. Some days, the NICU team removed three cups of fluid. They also worked to replenish blood and electrolytes that Genevieve was losing. Dr. Anderson-Berry says, Genevieve’s case is unlike any other documented. There were no case reports that outlined a successful treatment plan. Most days, the NICU team wasn’t sure she’d survive.
“It’s been minute to minute,” says Dr. Anderson-Berry. “But, if you look at her now, you’d never know she was so critical. Genevieve is writing her own story.”
Dr. Ann Anderson-Berry, medical director of the NICU at Nebraska Medicine, speaks with local reporters about Genevieve’s condition.
This week, Genevieve will likely be discharged and go home to join her parents and three siblings in Lincoln, Neb. She’s off the ventilator and respiratory support. She’s acting like a normal newborn, smacking her lips, smiling and scanning the room with her eyes.
“I feel like all I do is stare at her,” says Wright. “Where there’s life, there’s hope. This medical team really gave it their all. You gotta give them a chance, even the two percenters.”