Volume 78
Number 2

Miracle of an Ordinary Life

Commencement 2002

Cuba: Paradox Island

Without Sanctuary

Alumni Authors

Elizabeth Dewberry ’89PhD

Previous issue: Spring 2002





















































ELEVEN-YEAR-OLD Nancy Jean Howe is playing hoops in her Sandy Springs driveway, swishing a few baskets while waiting to go to soccer practice. She’s a natural, moving with an effortless grace not often seen in lanky fifth-graders.

Whether playing second base on a boys’ baseball team or winning a race at school, Nancy (left) thrives on the competition. “I just feel confident in myself that I can do it,” says the freckled, fair-haired athlete, who has a shelf full of sports trophies in her bedroom. Her prize possession is a baseball with a date inscribed on it: May 20, 2000.

“That was the game,” she recounts proudly, “where I did some really good fielding on a grounder and threw it to first base and the coach said, ‘Now that’s how to play baseball!’ ’’

Nancy, who was born without a full diaphragm and almost no left lung, has far surpassed anything doctors at Egleston Children’s Hospital/Children’s Health Care of Atlanta thought she could achieve. “They told us she would never play sports or be an opera singer,” says Jean Hetzel, Nancy’s mother. “In fact, when we first brought her home when she was two months old, we weren’t even supposed to let her cry.”

If Nancy had been born just a few years earlier, she almost surely would have died. But because of rapid advances in neonatology, babies born prematurely or with severe medical problems have a good shot at not only surviving, but thriving. “We’re just happy to be able to treat her normally,” says her father, Jeff Howe.

Nancy’s good health is the result of a series of high-tech medical interventions. She lifts up her T-shirt to show off the six-inch, pale white scar stitched across her left ribcage up to her breastbone, a reminder of life-saving surgery when she was two days old.

Born at Northside Hospital in Atlanta on June 11, 1991, Nancy is the second daughter of Hetzel, a kindergarten assistant at Highpoint Elementary, and Howe, a chef at The Weather Channel. Hetzel’s pregnancy had been routine, and the baby was full-term—seven pounds, with a full head of brown hair. But just seconds after delivery, when her lungs were supposed to take over supplying oxygen for her body, Nancy turned blue and didn’t cry.

“Everyone was really quiet. Then the room filled up with the people you don’t want in the delivery room with you,” Hetzel remembers, “and they took her from us.”

Nancy had a diaphragmatic hernia, which occurs in about 1 in 3,000 live births; her intestines had pushed up into her chest where her left lung should have developed.

She was taken to Northside’s NICU and hooked up to a ventilator. After X-rays showed a left lung the size of a thumbnail, she was taken by neonatal transport—Emory’s Angel II —to Egleston Children’s Hospital on Clifton Road, where Emory neonatologist J. Devn Cornish took charge of her care. Within twenty-four hours, she had had two surgeries. Doctors immediately fashioned an expandable Gore-Tex patch and attached it to her ribs to act as an artificial diaphragm, and she was placed on extra corporeal membrane oxygenation (ECMO,) an innovative procedure Egleston had begun performing just the year before. Tubes ran from a vein in Nancy’s neck to the cylindrical device—a scaled-down version of a heart-lung machine—that put oxygen into her blood. She stayed on ECMO for thirteen days, with the hope that her existing lungs would expand and heal enough to take over the job.

“It all happens so fast, your brain doesn’t have time to register all the possible complications,” Hetzel says. “We did know she had less than a 10 percent chance of living. We couldn’t even hold her. All we could do was touch the top of her head.”

ECMO is a very high-risk, invasive procedure, says Cornish, who came to Emory in 1990 to establish Egleston’s ECMO program after starting similar programs in San Antonio and San Diego. “It’s clearly a treatment of last resort,” he says. “But there are circumstances where the potential benefits far outweigh the risks, and this was the case with Nancy.”

Nancy was the third of three babies with diaphragmatic hernias treated with ECMO at Egleston and the first to survive. She was weaned off the ventilator—a landmark for NICU babies—around the Fourth of July and went home in mid-August.

Hetzel flips through a photo album filled with Polaroids from Nancy’s two months in the unit: it begins with a sedated baby attached to a tangle of tubes and ends with a plump, smiling toddler playing with her four-year-old sister, Abby.

Egleston’s “New Beginnings” calendar for 1993 featured a round-eyed, eighteen-month-old Nancy on the cover, and the hospital’s 1995 holiday cards had four-year-old Nancy’s green handprint fashioned into wreaths on the front. She had become a living symbol of what high-level NICUs can offer critically ill babies: a future.

The NICU at Egleston Children’s Hospital, on Emory’s main campus, is one of three in the Atlanta area staffed by Emory’s sixteen neonatologists: two level III units, at Crawford Long Hospital in midtown and Grady Memorial Hospital in downtown, and a level IV unit—the highest level of neonatal care available—at Egleston.

Egleston specializes in the toughest neonatal cases in the region: infants who need state-of-the-art surgery or the most complicated treatments. Eleven babies can be cared for in the intensive care unit (up to three on ECMO,) and ten more in the intermediate care unit. On any given day, the staff could be dealing with brain hemorrhages, undeveloped lungs, severe infections, or cardiac problems.

“Egleston offers everything a baby could require,” says Augusto Sola, director of Emory’s Division of Neonatal-Perinatal Medicine and a Goddard Scholar, who came to Emory last year from Cedars-Sinai Medical Center in Los Angeles. “Truly, the babies we care for at Emory have good outcomes. But Georgia is still fourth from the bottom nationally in terms of infant mortality, so we have a long way to go in improving education, prenatal care, outreach, and access to care. If these little babies and their mothers could make a demonstration, and hold protests with signs, they might get the funding and attention they deserve.”


NEONATOLOGY IS A FAIRLY MODERN SCIENCE which, for centuries, was deemed unnecessary: frail, sickly babies were “meant” to die, just as the fit and strong should survive, so that society would not be burdened by the lame or the constitutionally weak.

Even after a human incubator was invented in the late 1880s in France, premature infants were seen as little more than curiosities. Sideshows at international expositions and fairs began featuring “child hatcheries,” which attracted long lines of visitors willing to pay to see tiny babies in incubators complete with air filtration, humidifiers, and monitors. To everyone’s surprise, the babies survived, and hospitals around the world began using these devices.

During the 1950s, heated Isolettes, made of clear Plexiglas, replaced heavy wooden and metal incubators, and in the 1960s, ventilators were used to pump oxygen-enriched air directly into premature infants’ lungs, which became the standard treatment for respiratory distress.

The need for better treatments for premature infants received national attention and increased research funding in 1963, after President John F. Kennedy’s third child, Patrick, was born six weeks early and died of respiratory distress syndrome.

Neonatology is now one of sixteen subspecialties in pediatrics, requiring three years of additional study after becoming a pediatrician. It’s a demanding specialty, both in skills and stamina—high-risk births and crises in newborns seldom occur during normal business hours. For Emory’s neonatologists, this means rotating shifts and occasional weekend and night duty, in addition to training residents and fellows, giving lectures, and doing research.

Cornish, now chair of pediatrics at Emory, still works a neonatology on-call shift once a month. “The last weekend I was on, I started at 7:15 Saturday morning and got home at 7 o’clock Monday night, with a few hours of sleep on the floor of my office at Grady,” he says. “That’s what neonatology is often like—pretty grueling.”

Still, there are considerable rewards: the fast pace, the intellectual challenge, the immediacy of critical care, and the patients who come back to visit, a little taller each year

AS AN URBAN, PUBLIC HOSPITAL, Grady Memorial’s main mission is to provide health care to Atlanta’s poor—it is obligated to accept any patient. About half of Grady’s patients are covered by Medicare or Medicaid.

Grady is also a teaching hospital, with what the Atlanta Journal-Constitution’s Cynthia Tucker calls a “hard-working, top-notch staff struggling to deliver top-quality care under difficult circumstances.” On Grady’s fifth floor is the first, and still one of the largest, special-care nurseries in Atlanta, with forty intensive care beds and thirty-eight intermediate care beds.

The hospital’s maternal-fetal medicine section receives high-risk transfers from other obstetricians in the state, and the hospital also sees a large number of disadvantaged women, addicts, or immigrants who received little or no prenatal care. This results in a higher than average number of premature, low-birth-weight infants: About 15 percent (twice the state average) of the 4,500 infants born annually at Grady are younger than thirty-seven weeks gestation or weigh less than 2,500 grams (five pounds, eight ounces.)

“Grady sees a very diverse patient population and a high-risk maternal group,” says Susie Buchter, medical director of Grady’s NICU, who joined the Emory faculty in 1984 after finishing her fellowship in neonatology here. “But every child is given the care they need.”

This afternoon, there are twenty-three babies in the dimly lit NICU, lined up against the wall in aquarium-sized, Plexiglass incubators and surrounded by a battery of heart monitors, ventilators, heaters, and humidifiers. Long strands of plastic tubing seem to tether these fragile, naked infants to the physical world—almost all premature babies younger than thirty-two weeks must be intubated and placed on ventilators, since their lungs are not yet fully developed, and many have IVs or feeding tubes, since they’re too small or ill to nurse or take a bottle.

Highly skilled neonatal nurse practitioners and bedside nurses (who take care of three to four infants at most) are with the babies around the clock, while scores of doctors, respiratory therapists, nutritionists, and other specialists circulate through the NICU, doing rounds, checking vitals, responding to alarms, updating charts, consulting with small clusters of anxious parents and grandparents.

“The babies require ongoing, daily assessment,” says Ira Adams-Chapman, the Emory neonatologist working at Grady this afternoon. She monitors the machines, but also relies on hands-on exams to check for heart problems, apnea (premies have a tendency to “forget” to breathe), or distended abdomens. “Things constantly come up with these kids—infections or complications—you can never really trust them.”

A calm, quiet efficiency emanates from Adams-Chapman, who came to Emory in 1998 from a fellowship in San Diego. She was drawn to neonatology for its “critical care aspect, but also, because most of our kids are able to go home. And the babies are here for a while, so we get to know them and their families and establish relationships.

Ideally, neonatologists become involved with the family before the baby arrives. By using prior birth histories, ultrasounds, amniocentesis, and other prenatal diagnostic tests, many high-risk births can be anticipated.

This was the situation with Aicha Keita, originally from Mali, West Africa, who had seven previous miscarriages and one living child. Doctors at Grady decided to give Aicha steroid shots during her most recent pregnancy to strengthen the baby’s lungs in utero. At twenty-seven weeks, Keita developed pre-eclampsia (a condition involving high blood pressure), which forced a Caesarean section. Abdelkader “Kader” Keita, three months early and weighing one pound, four ounces, was whisked away to the NICU, where he was placed on a ventilator.

Premies have two ages: one based on the day they were actually born, the other on the date they would have been born if they had been full-term. Often, they will be released from the NICU near their due date, and their development follows that of a baby born on that date.

Kader was born January 5, 2001, three months earlier than his original due date of April 8. He went home from the NICU in May and is now sixteen months old, but is developmentally on target for his “adjusted age” of thirteen months: he’s cut three teeth, babbles, and pulls himself up to stand.

“His five-year-old sister has really helped to propel him on,” says Kader’s home health care nurse, Janet Alston. “It makes a big difference when there’s support in the home from the family. I can say that from experience, because I work with babies who don’t have that network of support and it takes them longer.”

Kader also receives periodic assessments at Emory’s Developmental Progress Clinic, where evaluations are performed on babies who have “graduated” from the NICUs to help doctors and families gauge their therapeutic needs.


CREATING THE OPTIMAL ENVIRONMENT for the long-term health of premature infants is a priority at Crawford Long Hospital’s NICU, which moved into new quarters this summer, becoming part of a comprehensive birthing center on the third floor of the recently completed Crawford Long medical complex, across from the original hospital on Peachtree Street.

The unit, which has eight intensive care beds and sixteen intermediate care beds, serves as a developmental lab where the latest research is applied. Dim lights, muted sound, touch times (to ensure the baby is not overstimulated,) and covered incubators all play a role. But “teaching the mother how to relate to her baby, to read its cues, to help the baby soothe and support itself, this is the most important factor for the long-haul,” says Ann Critz, an Emory neonatologist for twenty-two years who developed the special care nurseries at Crawford Long.

The tiniest babies cared for at Grady and Crawford Long are “micropremies,” who weigh less than 1,500 grams (three pounds, five ounces) and are between twenty-three and twenty-five weeks’ gestation. Babies this young exist at the lowest limits of medicine’s ability to save premature infants; just fifteen years ago, twenty-four-week-old fetuses were considered miscarriages and no attempts were made to save them.

By all rights, micropremies should still be floating in the dark confines of the womb. Their nervous systems are hypersensitive and easily overwhelmed. Because their bodies do not have much fat under the skin, they are unable to control their own temperatures and become easily dehydrated. Their organs are fully formed, but not necessarily functional. The blood vessels in their brain are fragile and sometimes burst, requiring surgery, and the mechanism that allows them to suck and swallow and breathe without choking is not yet in place. Of the micropremies who do survive, about half will have vision problems, many will have developmental delays, and some face cerebral palsy and lung disease. For the smallest and sickest of these babies, the decision must sometimes be made to let them die, instead of continuing high-tech efforts to prolong their lives

“There are babies who are so very premature, it’s difficult to support treatment. They are unlikely to survive and, if they do, they have a high rate of serious complications,” says Cornish. “We feel morally obligated to do everything that should be done, but not necessarily everything that could be done.”

Cornish, who received his medical degree from Johns Hopkins and did his residency at Harvard, understands how emotional this decision is for the parents: He has six children of his own, two of whom spent time in NICUs, including his youngest, who has Down syndrome and required open heart surgery as a baby. “When I talk to the family of a high-risk baby, I tell them I’ve sat on the other end of the discussion, and that I will include them in every decision we make,” says Cornish.

If families and doctors can’t agree on whether care should be continued or withdrawn, a bioethics committee is consulted. The committee, which includes doctors, nurses, hospital administrators, social workers, and chaplains, makes a recommendation based on what’s in the best interest of the child.

THE EMPHASIS IN NEONATOLOGY has switched from keeping ever younger, smaller neonates alive to giving premature babies who do survive the best shot at healthy, vital lives. “We seem to be butting up against the lower limits,” Buchter says. “Now, we’re focusing on better outcomes—nutrition, brain growth, lack of complications. That’s the next major thrust.”

Emory also has been involved in cutting-edge research, such as the earliest clinical trials in the 1980s of different forms of surfactant, a milky liquid that serves as a natural lubricant in the lung. When surfactant, which is produced naturally in full-term babies, is dripped into premature infants’ breathing tubes, it helps to keep the air sacs of the lungs inflated.

“We found that babies who had surfactant had higher survival rates, a much shorter stay, decreased lung disease, and weren’t on ventilators as long,” says Aimee Poor, Emory’s neonatal nurse practitioner coordinator.

The use of surfactant has cut deaths from respiratory distress syndrome in half since 1990, the year it was approved by the Food and Drug Administration. “The morbidity of being a pre-term baby has really changed,” says Buchter, who did her own neonatal residency in the mid-1980s when premature infants’ lungs frequently collapsed. “My residents today, very few of them learn how to put a chest tube in, whereas it’s something I did every night on call.”

Another life-saving advance has been finding the right mixture of protein and fats to feed premature infants through their IVs, which is deposited directly into the baby’s bloodstream through intravenous catheters the size of fishing line threaded into arteries that aren’t much larger. Monitoring what goes in—and what comes out—is crucial.

“You have a patient who can’t talk to you or follow commands,” Buchter says. “To me, the art comes in being able to sense what’s going on through subtle changes. The more meticulous you are with their care, the better. You have to calculate every milligram of glucose given, every drop of urine produced. A teaspoon of fluid is a huge amount to a one to two pound baby.”

In the microcosm of gestation, something magical seems to occur around the six-month threshold: Of infants born at twenty-three weeks, 90 percent will die; of those born at twenty-six weeks, 90 percent will live.

At this point, every ounce and every day can make a difference. Pamela Brooks knows this first-hand: she spent the last two days of her first pregnancy in the spring of 1993 upside down in a hospital bed at Crawford Long, trying to keep her baby inside for every additional hour possible.

“I looked like a science experiment,” says Pam, who had already taken steroid shots to help develop the baby’s lungs in utero. “I was in total crisis mode when most women are having their baby showers.”

Pam, assistant director of corporate relations in institutional advancement at Emory, and her husband, Richard, a real estate investor who graduated from Emory College in 1989, knew her pregnancy was high risk, since Pam had been diagnosed with fibroid tumors. But they weren’t prepared for how tiny one-pound, eight-ounce Kelsi Briana would be, born a full three months before Pam’s due date.

“The first time I saw her, she was an hour old in the incubator. Her cry sounded like a kitten. With her legs curled up, she was the length of my hand. It was such a shock, it all had a surreal feeling,” Richard says. “But at my first word, her eyes popped open. She knew her daddy.”

Kelsi’s baby book opens with a photo of her hooked up to a ventilator, above the handwritten caption: “I’m small but mighty.” After three months in the Crawford Long NICU, under the care of Ann Critz, she went home on her father’s birthday, Aug. 6.

Now nine and in perfect health, Kelsi will enter fourth grade at St. Thomas More in Decatur in the fall. She enjoys tennis, just played a successful duet of “This Old Man” with her mom at a piano recital, and loves math and science.

The Brooks’s second child, Kayla, now seven, was also premature, born one month early and weighing four pounds, four ounces. She stayed in Crawford Long’s NICU for a month. “We were eager to take her home,” Pam says. “She was bigger than we were used to.”

Kelsi and Kayla are looking forward to bike-riding and hula-hooping over summer vacation at their Stone Mountain home. “I can’t do the hula-hoop around my waist, but I can spin it on my arms,” Kelsi says, demonstrating in her driveway.

And as the hoops spin and her smile widens, the mighty Kelsi demonstrates the full joy and wonder that can be hidden in an ordinary summer afternoon.




© 2002 Emory University