IOWA CITY — Only the very tip of Amanda Liles’s finger could fit into her daughter’s tiny palm. From head to toe, Lillyawna stretched just beyond the length of Liles’s hand.
“She is a miracle,” Lillyawna’s dad, Josh Volker, said through tears last week. “She was a miracle the day she was born. And she will be a miracle the rest of her life.”
Lillyawna Sky Volker was born Nov. 19 at 22 weeks gestation. She weighed 15 ounces and lived two and a half weeks before succumbing to a severe blood infection on Dec. 6.
She was among the youngest and smallest premature babies ever born at the University of Iowa Hospitals and Clinics.
Had she lived, she would have been among the youngest and smallest surviving premature babies on record. Even though she lost her fight, the odds for extremely premature infants such as Lillyawna are improving every day – especially at top-level facilities such as the UI Children’s Hospital.
“Five years ago, we wouldn’t have even strongly considered trying to resuscitate and trying to maintain a baby this premature,” said Jeffrey Segar, director of the UIHC Division of Neonatology. “Most large institutions around the country still will not do that at 22 weeks.”
The national survival rate for babies born at 22 weeks – out of 40 weeks for a full-term pregnancy – is about 20 to 25 percent, according to a 2012 UI study. At the UI Children’s Hospital, the rate is higher, at about 50 percent, Segar said.
Five to 10 years ago, the survival rate at 22 weeks would have been no more than 5 to 10 percent, he said. Before that, Segar said, “We would not, except with rare exception, even consider attempting to resuscitate and maintain a 22-week gestation infant.”
The UI Children’s Hospital is home to a Level IV neonatal intensive care unit – the highest level recognized by the American Academy of Pediatrics.
From 2010 to 2012, the UIHC had 12 babies born in the 22nd week – about half of whom lived. Experts say the youngest premature babies to survive on record were born in the 21st week, just days earlier than Lillyawna.
Segar said most babies born that early who don’t survive don’t make it past two weeks. Lillyawna did, but she – as with all babies born that early and that small – faced an array of hurdles, including immature lungs, bleeding in the brain and blood infections.
Extremely premature babies also are at heightened risk of neurological problems later in life – although Segar said research in that area is limited because so few people have been born that early.
Dexter Brady of Iowa City is one of them. The now “feisty” 4-year-old was born at 23 weeks and 6 days on Sept. 8, 2009. His mother, Tundi Brady, said that when she went into labor with her son and his twin sister, Beatrix, almost four months early, she did not expect them to survive.
Beatrix came first, on Sept. 2, 2009, and she lived about 20 minutes, Brady said.
“We waited, assuming the other baby would be born, but nothing happened,” she said. “The doctors said, ‘We have another chance at this. We can buy ourselves a few days.’”
Even then, Brady said, everyone acknowledged that survival was a “long shot.” Dexter was born six days later, weighing 1.1 pounds, and he was rushed to an incubator. Brady said she didn’t feel joy.
“I was sad,” she said. “I wasn’t hopeful. I didn’t feel like this was a congratulations thing. It felt like it was an absolute tragedy.”
At the most, Brady said, she was prepared for a child with disabilities.
“We didn’t think it was possible for him to go to kindergarten and to learn with all the other kids,” she said.
But that is exactly what Dexter will do. At age 3, he tested in the normal range for development, and Brady said she forever will be grateful to the doctors, researchers and donations that made it possible.
“This little guy gets to contribute to the world, and to love and to learn and to give back,” she said. “He gets to do all that. He has as much opportunity as any other kiddo now, and that’s amazing.
“Just a few years ago, it was absolutely not a possibility.”
Dexter stayed in the hospital for 150 days and came home Feb. 5 – five months after his birth and just over a month past his due date.
“It was a huge celebration,” Brady said. “We were very very happy to be home with him.”
But, she said, it took her a long time to embrace that as a reality.
“We were just thankful for whatever time we had with Dexter,” Brady said. “We never knew what would happen in the next days or weeks.”
‘She was a fighter’
Lillyawna’s life was too short. But Volker, 35, and Liles, 25, said they also are thankful for the time they got – recalling the moments they shared reading to her, holding her hand and singing to her.
“We got to have our first and last dance,” Volker said. It was to the Pink Floyd song, “Wish You Were Here.”
Lilllyawna’s life was notable in that many babies born that young never take a breath – let alone live two weeks.
“She was a fighter, she fought so hard to live,” Volker said. “Her spirit was there, but her little heart gave out on her.”
Liles had to be induced on Nov. 17 after doctors discovered the amniotic fluid around her baby was gone and she had an infection. The induction took more than 32 hours – a Cesarean section wasn’t an option because of the infection, Volker said.
“The doctors didn’t expect (Lillyawna) to survive,” he recalled. “They said that if she wasn’t breathing when she came out, they couldn’t resuscitate her because she was too small and fragile.”
Volker said he stayed in the bed with his wife during much of the labor, praying.
“When she came out, I started sobbing when I saw her moving,” he said. “They rushed her to the warmer. We were just watching, scared.”
About a week after her birth, Lillyawna developed the infection that eventually took her life. But the hope she offered at such a premature stage was remarkable and could become more common in the future, Segar said.
“I would like to think, with additional experience and resources, the odds for survival at 22 weeks will continue to increase,” he said.
Still, absent major medical breakthroughs, such as an artificial placenta, Segar said there are limits to what doctors can do.
“At some point you hit a stage of physiological development that is just too immature to support life outside the womb,” he said.
UI premature babies
Below are statistics on babies admitted to the University of Iowa Children’s Hospital NICU from 2010 to 2012.
22 weeks – 12 infants
23 weeks – 23 infants
24 weeks – 33 infants
25 weeks – 25 infants
26 weeks – 44 infants
27 weeks – 45 infants
28 weeks – 63 infants
UI infant survival rates
Survival rates for babies born at 22, 23, 24 and 25 weeks are “significantly higher than survival rates for extremely premature infants born at other U.S. hospitals.”
22 weeks – 50 percent
23 weeks – 68 percent
24 weeks – 83 percent
25 weeks – 91 percent
Source: University of Iowa Hospitals and Clinics and Jeffrey Segar, director of the UIHC Division of Neonatology