The NICU at the Nebraska Medical Center was silent except for Shelly Wright’s whispers. Her infant daughter slept in her arms, wrapped in a blanket.
A small thing to most parents. A miracle to Wright.
“She’s been in the fight of her life,” the mother of four said Monday.
Baby Genevieve, while still in the womb, wasn’t expected to survive her birthday. She suffered from a rare, life-threatening condition called hydrops fetalis, which caused fluid to collect in her tiny organs.
Doctors in Lincoln, where the family lives, discovered the condition when Wright was 31 weeks pregnant and said she should be prepared to say goodbye to her little girl.
“We went home and did a lot of crying and praying,” Wright said.
That week, at her doctor’s recommendation, she flew to Los Angeles, where a neonatal specialist attempted to remove the excess fluid. It wasn’t working. She decided to return home to Nebraska and meet with the NICU team at the Nebraska Medical Center in Omaha.
The Omaha hospital sees a half-dozen newborns with hydrops fetalis each year, according to Dr. Ann Anderson-Berry, the medical director of the NICU at the med center.
Genevieve’s case was among the most severe and “incredibly rare,” Anderson-Berry said. There were no case reports that detailed a successful treatment of such an aggressive form of hydrops fetalis to advise the med center team.
Wright, a 37-year-old nurse, underwent an urgent c-section in February. The medical team immediately placed tubes – 14 in all – in the newborn’s chest to drain the fluid from her lungs.
She weighed 4 pounds, 12 ounces. Most babies her size with hydrops fetalis are expected to produce an ounce or two of excess fluid daily, according to Anderson-Berry. Genevieve expended three-fourths of a liter of excess fluid a day, or about 25 ounces.
Shelly Wright said her daughter was so swollen, she looked as if she might pop.
“It was minute to minute,” Anderson-Berry said of the baby’s survival.
The baby’s turning point came a month ago. Genevieve’s NICU team injected a special fluid into the affected area that causes a scab to form. It allowed the area to heal and stop producing fluid. She is also on medication to regulate the fluid in her body.
“If you looked at her now, you would never know she was so critical,” Anderson-Berry said. “Genevieve is writing her own story.”
The doctor added that Genevieve’s treatment might guide other NICU teams and give hope to families who find themselves in a similar situation.
Genevieve’s mom said the 9-week-old acts like a normal newborn now, smacking her lips, following her parents’ voices, scanning the room with wide eyes.
“I feel like all I do is stare at her,” Wright said. “It’s a miracle.”
On Monday afternoon in the NICU, she stared as her daughter dreamed. An oversized pink and yellow bow crowned the sleeping girl’s head. It matched the onesie that read, “I’m kind of a big deal.”
“Dr. Anderson wanted us to cross out ‘kind of,’” Wright laughed.
Genevieve will likely be discharged this week to go home to her parents and three siblings in Lincoln.
Her mom teared up at the thought.
“Where there’s life,” she said, “there’s hope.”
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