Experts at Cincinnati Children’s partner to improve outcomes for fragile babies

Chloe is in a gifted program at her school.Chloe, 8, is soft spoken and a little shy, but her smile gets you. She positively glows when she grins—and you can’t help but smile in return.

But her smile almost never came to be.

Born about a month early at St. Elizabeth Medical Center in Northern Kentucky, Chloe fought for her life from the moment she was born.

"She was purple and not breathing,” says Gina, Chloe’s mom, her voice steady. She’s told this story many times. “She was immediately put on a ventilator to help her breathe. Then, seemingly out of nowhere, a doctor from Cincinnati Children’s appeared. He knew immediately that something was wrong with her heart and arranged for her to be rushed to Cincinnati Children's."

Partnering With Other Hospitals

Pregnancy and birth are supposed to be a joyous time for parents and families. Unfortunately, that’s not always the case. Birth defects and premature birth can cause life-threatening complications for babies. Social factors, such as lack of access to prenatal care or maternal drug and alcohol addiction can also cause serious health challenges for newborns.

That's why neonatologists from Cincinnati Children’s staff the newborn intensive care units (NICUs) at all area hospitals, which enables us to identify babies with complex medical needs immediately after delivery.

"We provide comprehensive care for newborns while they are in their birth hospital nursery,” explains Amy Nathan, MD, medical director of the Perinatal Institute at Cincinnati Children’s. “This gives us the best opportunity to improve outcomes by getting fragile newborns the specialized care they need as soon as possible."

The most critically ill babies are transferred from their birth hospital to the NICU at Cincinnati Children’s—our region’s only Level IV intensive care unit.

Taking Care of Chloe

Gina, aching with worry, watched as the Cincinnati Children’s transport team brought Chloe to her bedside before they took her to the medical center’s specialized neonatal ambulance.

"It meant so much that they let me see her before they took her to Cincinnati Children’s,” Gina remembers. “And throughout everything, they kept me updated. It was hard to be away from her, but at least I knew what was happening."

Upon her arrival at Cincinnati Children’s, doctors and nurses surrounded Chloe’s incubator, working to keep her tiny body stable enough for surgery.

"Chloe had her first heart operation when she was only 5 days old,” Gina pauses. “I was so scared."

During that surgery the doctors discovered that Chloe only had the right half of her heart. And that meant she’d need more than one operation.

"The surgeons fixed Chloe’s heart so she could grow big enough for the next surgery she needed,” Gina says softly. “She was 5 months old when her second operation took place, and her doctors were able to create a more permanent fix. We could breathe a little after that. We knew she’d need one more procedure, but this one would give her time to grow up.”

Helping the Most Fragile Babies Thrive

Sometimes, babies need our help even before they are born.

Born 15 weeks early, Eleanor spent 116 days in the NICU at Cincinnati Children’s.In 2012, Stacy and Matt were living in Louisville, Kentucky, and expecting their first child. “We walked into our 20-week ultrasound expecting to find out our baby’s gender. Instead, we walked out with a diagnosis,” remembers Stacy.

Stacy and Matt’s unborn daughter, Eleanor, had spina bifida, meaning her spine did not fully close as she developed in the womb. Looking for answers, Stacy and Matt decided to visit the Cincinnati Fetal Care Center at Cincinnati Children’s to find out all of their options.

"We temporarily relocated to Cincinnati and had a procedure to close her spine in utero,” Stacy explains. “It was a success, and we were sent to our temporary Cincinnati home five days later.”

But that was only the beginning of their Cincinnati Children’s experience—Stacy went into preterm labor and Eleanor was born 15 weeks early, weighing only 1 pound, 9 ounces.

"I spent a few minutes with her before she was whisked over to the NICU at Cincinnati Children’s,” Stacy says. “They saved her life, and I truly believe that if we had been anywhere else, she wouldn’t have survived. We brought her home to Louisville 116 days after she was born.”

Donors Help Us Change Outcomes

It’s the close ties between our researchers and care providers that help us lead the way in caring for fragile babies like Chloe and Eleanor.

"Cincinnati Children’s meshes an active clinical care program with unparalleled research in child health,” says Lou Muglia, MD, PhD, co-director of our Perinatal Institute. “Our clinicians provide care to these fragile infants while working directly with our researchers, who are discovering better therapies to care for the smallest, sickest babies."

And it's donor investment that largely fuels those advances.

"Right now, only 5 percent of funding from the National Institutes of Health goes toward research on child health.” Dr. Muglia pauses. “Children are 30 percent of the population, so that doesn’t seem quite equitable. We rely greatly on donor funding to further research and care for these tiny babies.”

That's why Stacy and Matt have made it a priority to give back to Cincinnati Children’s.

"When your child is sick, you want answers and you want the best care—and both are at Cincinnati Children’s.” Stacy is emphatic. “Supporting the medical center allows them to continue as a premier medical provider for children and ensures Cincinnati Children’s remains an answer for families who need help.”

Changing Lives Together

"Without the doctors and nurses at Cincinnati Children’s, I wouldn’t be here,” Chloe says in her whisper-soft voice. “They always take good care of me.”

While both Chloe and Eleanor are thriving today, their positive outcomes weren’t always guaranteed.

"We've done a great job improving care for fragile babies over the years,” Dr. Muglia says. “But philanthropy is crucial if we’re going to continue making the progress we need to care for these infants.”

Chloe and Gina have seen the impact that donors and families have in the care our experts provide. “In the past eight years, we’ve seen the level of care continue to advance,” Gina says. “Chloe is flourishing, and it’s because people give back to make that happen."