Carey Kuznar's in-vitro fertilization was a success—she and Zak Kuznar would be parents of twins. But at 31 weeks, their excitement turned to worry after a routine ultrasound found that one twin had stopped growing. When Carey developed potentially lethal preeclampsia, the babies had to be delivered by C-section two months early.
The twins were lucky to be born at MacDonald Women's Hospital. It connects through a hallway to Rainbow Babies and Children's Hospital in Cleveland, which can care for the smallest and sickest infants. Rainbow neonatologists rushed a silent Evan and a wailing Keira to the neonatal ICU as soon as they were lifted from their mother's uterus. The Kuznars didn't even get a chance to hold them. "It was surreal," Carey says of the first sight of their 3-pound, 7-ounce son and 2-pound, 4-ounce daughter, cocooned in plastic incubators amid tangles of wires and feeding tubes.
With the help of air flowing gently into her immature lungs, Keira could breathe on her own within hours. But Evan had to rely on a higher-pressure ventilator that rhythmically forced air into his lungs and had to have emergency surgery to deflate an air pocket between his chest and lungs. His heart began to fail. "I thought he wasn't going to make it," says Zak. "I was kind of preparing myself." But he pulled through. "Had we been at another hospital," Carey says, "I'm not sure Evan would be here with us today."
Rainbow caregivers helped take the edge off the frightening weeks in the NICU. "They really accommodated and included us," says Carey. Rocking chairs were provided. A screen gave them privacy for "kangaroo care," holding each baby upright against their bare chests. "If you closed your eyes," says Carey, "for that moment it was like being at home"—as they are now. Crawling, giggling, and taking first steps, the twins are ordinary 1-year-olds. "We enjoy their lives so much because we know what a struggle they've been through," she says.
Welcomed. In the '70s, parents were barred from most NICUs until their babies were ready to leave. Not at Rainbow. "We were among the first in the country to include parents as partners in our working rounds, so that they're completely involved in the care plan," says Michele Walsh, the NICU's medical director. "They're not 'visitors'; they're not 'observers.' They know their children best, and we actively solicit their input."
Next year, a new NICU, with a separate room for each baby (or multiples like the Kuznar twins), will replace an arrangement that puts as many as six infants in one room. The new rooms will have beds, fridges, and TVs so that parents can stay around the clock. An open setting subjects babies to bright lights and noise when there's a medical crisis nearby. Sick infants do better in a calm, low-light environment, Walsh says.
Rainbow doctors seek alternatives to aggressive interventions that could save a life but cause a lifetime of complications, says the NICU's associate medical director, Jonathan Fanaroff—who was a Rainbow baby decades ago. Just a few years back, Rainbow routinely used ventilators on most preemies, sometimes permanently damaging their undeveloped lungs. Whenever possible, infants now are treated, as Keira was, with a gentler device. Rainbow tracks the tiniest preemies into adolescence and beyond to detect lasting complications, such as asthma from prior lung damage. "It's not good enough to help [infants] survive," says Walsh. The goal is "to help them live great lives."