Preemies get high-tech medical care while their parents get guidance—and support—in nurturing the tiniest babies.
Cradled in his mother’s arms, tiny Owen Denning drinks breast milk from a two-ounce bottle. A doll-sized striped hat and cozy blanket keep him warm, and he rests one delicate hand lightly against his cheek. Not an unusual scene, except that Owen, born three months prematurely, began his life at just 2.2 pounds. But after two months at the Alta Bates Summit Medical Center Neonatal Intensive Care Unit (NICU), Owen is a relative giant among his peers, weighing in at 4 pounds, 7 ounces. No longer attached to a breathing mask, feeding tube, or IV, Owen has also learned to regulate his own body temperature, graduating from a climate-controlled isolette (a bed enclosed by clear hard plastic) to an open crib.
Owen’s mom, 37-year-old Dana Denning, had been enjoying a healthy pregnancy until her 27th week. At that point, she developed severe preeclampsia, a pregnancy-related condition that causes high blood pressure and is potentially fatal to both mother and baby. In cases like Denning’s, doctors try to prolong the pregnancy as long as safely possible, but the only cure is delivery of the baby. Although the Dennings live in Fairfield, Dana was admitted to Berkeley’s Alta Bates Summit Medical Center, where medical staff could treat Dana’s grave medical condition as well as care for a very premature newborn. Owen was delivered by emergency C-section just five days after Denning came to Alta Bates Summit.
“It all started as a nightmare,” she says, as Owen yawns broadly, displaying his pink tongue. “But it’s turned into a great experience because everyone here has been so helpful and nurturing.” Denning, a first-time mom with short brown hair and a friendly smile, is on leave from her job with GapBody. She looks up briefly as the monitor displaying Owen’s vital signs beeps a staccato alarm. Denning explains that Owen has had a “brady” (short for bradycardia), meaning that his heart rate has slowed because he’s taken a gulp of milk and forgotten to breathe. She takes the news in stride; it’s not unusual for preemies to experience this glitch as they learn the mechanics of sucking, swallowing, and breathing. But bradys are an important obstacle to overcome—once Owen can drink and breathe at the same time, he can go home.
Neonatal intensive care can mean a harshly lit, noisy room where babies are lined up in isolettes, and high-tech monitors leave little space for Mom and Dad. But the Wayne and Gladys Valley Foundation NICU at Alta Bates Summit offers a different experience. “Many things are designed around taking the fear out of being here,” says nurse and NICU manager Peggy Lindsley, a 28-year veteran of Alta Bates Summit.
At the entrance to the nursery, a teddy bear smiles up from the linoleum floor, and pastel-colored alphabet blocks spell out “NICU” above the doorway. Although the floor holds up to 55 babies (and their formidable equipment), the setting feels bright and spacious. (The babies’ rooms, in contrast, are kept unlit to protect the preemies’ fragile nervous systems.) Babies admitted to the NICU range from 23-weekers to those born at term (40 weeks) with infections or other complications. Twins and even triplets are familiar sights in the NICU, and once they’re stable, multiples often sleep in the same crib. For preemies with complex medical or surgical needs that demand a higher level of care than Alta Bates Summit provides, local options include Children’s Hospital in Oakland, John Muir Hospital in Walnut Creek, UCSF Children’s Hospital, and Lucile Packard Children’s Hospital at Stanford. Other NICUs in the area are located at Kaiser Permanente Oakland and ValleyCare Medical Center in Pleasanton.
Babies typically remain in the NICU until their due date, when they reach the age of 38-40 weeks. Progress is slow and gradual—by 34 weeks, many preemies develop the coordination for the suck-swallow-breathe pattern needed for feeding. To be ready to go home, a baby must be able to maintain his body temperature without an extra heat source, to breast or bottle feed, and to breathe without pauses or drops in heart rate.
Alta Bates Summit was an innovator in developing the model for a family-centered nursery, according to the NICU’s Medical Director Dr. Amarjit Sandhu. Designed by Katie Rose, administrative director of the hospital’s Women and Infants Service, the expanded NICU opened in 1998. Since that time, neonatal staff from across the country have visited to learn from their family-focused approach.
Parents are welcome at any time, day or night, and friendly touches include a cozy family room, a parents’ sleeping room, a fridge and microwave, and toys for siblings. Semi-private babies’ rooms (with curtains for additional privacy) encourage bonding, and protect both parents and infants from the stress of what other preemies are going through.
“The parents are generally terrified,” says Alison Brooks, clinical nurse specalist. “It’s our job to build their confidence.” Although parents of preemies aren’t in a position they’d anticipated, adds Brooks, “their role as a parent, even just being with the baby at the bedside, is incredibly important.” Nurses teach parents to touch their baby’s head or feet through openings in the isolette. The next step is kangaroo holding, in which Mom (or Dad) places the baby against the chest, skin to skin, connecting the baby to the parent’s scent and heartbeat.
With practice, parents begin to read their baby’s cues. “Preemies are easily overwhelmed,” says Brooks. “We teach parents to do one thing at a time.” While the instinct may be to cuddle, rock, and sing all at once, preemies can’t handle this much stimulation. Parents quickly learn that splayed fingers, an averted gaze, hiccups, and changes in skin color likely mean their baby has had too much.
For many parents, their child’s early birth was a bolt from the blue. Alameda resident Elaine Stiles, whose twins, Milo and Madeline, were born at 25 weeks and spent about four months in the NICU, had no risk factors other than carrying twins. (Other risks for premature birth include uterine or cervical abnormalities, diabetes, high blood pressure, infection, and substance abuse.) “It was all a shock, to say the least,” says Stiles, referring to her sudden transition from a healthy pregnant woman to a new mom whose life was turned upside down.
Parents grow accustomed to a daily roller coaster of ups and downs: babies taken on and off a ventilator; frightening episodes during which the baby’s heartbeat or oxygen level falls too low; the joy of weight gain or successful breastfeeding. Excitement or bright lights in a baby’s room generally signals trouble. “What you want most,” notes Elaine Stiles’s husband, Rob, on a blog the couple started to chronicle their twins’ early arrival, “is darkness and the boredom of slow, steady progress.”
In a room just down the hall from Owen’s, nurse Michelle Vitatoe-Clayton is helping her young charge, a baby girl born at 26 weeks, to achieve just this kind of progress. Vitatoe-Clayton, petite and dark-haired, opens the two small doors on the side of the isolette and gently turns the baby over. “She’s very full and wanted to be on her belly,” she explains, her voice soft. “Now that her sats [oxygen saturation levels] are higher, I’m going to come down on her oxygen.” It’s an “intricate dance,” says Brooks, between nurse and baby—in this case, Vitatoe-Clayton knows that by placing the infant in a more comfortable position, she can give her slightly less oxygen. The baby is barely visible; patches of caramel-colored skin peek out between her breathing mask, an IV containing nutritional fluids, and a bandage covering the incision from heart surgery. “They have a way of letting us know what they need,” says Vitatoe-Clayton, who has been a neonatal nurse for 19 years.
Age and birth weight are powerful factors in determining a preemie’s future health. According to the March of Dimes, babies born in the United States at 26 weeks gestation have about an 80 percent survival rate, a percentage that jumps to 96 percent for those born at 28 to 31 weeks. But time and medical know-how are on the preemie’s side. “Most of these babies are getting stronger as time passes,” says neonatal nurse Robert Lieber. He is caring for a baby girl weighing just 1.2 pounds, her head barely bigger than a tennis ball. Amidst the tubes, medical tape, and diaper that cover most of her 11-inch body, one leg, about as wide as a test tube, kicks with surprising force every few seconds. A high-frequency ventilator provides a constant, minimal flow of oxygen, and her chest flutters continually up and down.
“The preemie’s job,” says NICU manager Lindsley, “is to eat and grow.” She adds that getting breast milk, first through feeding tubes and then through breast and bottle feeding, is essential for preemies, “almost like medicine.” In the NICU, breastfeeding moms are supported by nurses, lactation specialists, a private room for pumping, and a weekly mother’s milk club. A freezer in the hallway is stocked with pumped milk in miniature bottles, and milk from the San Jose Breast Milk Bank is delivered for moms unable to breastfeed.
Among the numerous medical problems to which a preemie is prone (immature lungs, difficulty feeding, and fragile skin), one of the most terrifying to parents is a heart-duct defect that often requires surgery. Last July 3, the Stileses’ daughter, Madeline, became the first baby to have this type of heart surgery (known as PDA ligation) on-site in the NICU. Previously, babies were transported to Children’s Hospital for the procedure. Performing the surgery at Alta Bates Summit is a huge advantage for babies in the NICU because it eliminates the risks involved with transfer. Milo, Madeline’s twin, underwent the same surgery several weeks later.
Costs for this type of care are staggering—the term “million-dollar baby” is not an exaggeration for many preemies. Expenses are covered largely through private insurance payments, Medi-Cal, and foundations including the Alta Bates Summit Medical Center Foundation.
Madeline Stiles went home in early October, followed by her brother 12 days later. Since then, they’ve been healthy, but need to steer clear of crowds and other children. (Small portions of their lungs were damaged by ventilators, so until their lungs get larger, a cold or other respiratory infection could compromise their breathing.) Typical for preemies, the nine-month-old twins are developmentally at 5.5 months, the approximate age they’d be now if they’d gone to term. Through social workers at the NICU, the Stiles family has been connected to regional and county programs that will monitor the twins’ physical and cognitive development, looking carefully for cerebral palsy, learning disabilities, and vision loss, all potential risks for preemies.
After all she’s been through, Stiles is upbeat and grateful. “The miracles of medical science and nature came together for my children. Although we had the most abnormal beginning you can imagine, now we have a pretty normal life.”
Rachel Trachten is a freelance journalist and copy editor and a regular contributor to The Monthly.