Preemie Time

Life starts out tough for the smallest babies at University Hospitals’ NICU
By Christopher Johnston
Photographs by Herb Ascherman Jr

By the time you read this, Olivia Grace Soppi-Huntley will probably be resting comfortably at home in her crib, under the watchful gaze of her mom, Sara Huntley. Exactly what you’d expect for a June baby, right? Thing is, little Olivia entered the world a few months early. Sunday, February 25, at 3:04 a.m. to be precise.

She then spent the first few months of her natural gestation in an assortment of artificial wombs at the neonatal intensive care unit, or NICU, on the second floor of University Hospitals Rainbow Babies & Children’s Hospital. The unit boasts the best survival rates for highrisk newborns in the United States, according to data from the National Institutes of Health–sponsored Neonatal Network medical centers.

“No one ever wants to be a neonatologist’s patient,” says Dr. Jonathan M. Fanaroff, neonatologist and one of 22 attending physicians in the NICU, which admits more than 1,000 newborns annually.“ By definition, it means there was something abnormal.”

Olivia’s early arrival started the afternoon of February 24, when Sara woke from a nap to experience what she considers the most frightening moment of her first 27 years. After eating a bowl of cereal, she felt increasingly intense stomach pains, which she, still being more than three months away from giving birth, mistook for indigestion. Antacid and a piece of bread to absorb stomach acid failed to help.

When the discomfort became “really horrible,” she called her mother, Joy, who lives nearby in Berea, where Sara grew up and bought her own home. Mom quickly diagnosed that it was time to call the doctor.

The emergency department staff at Southwest Hospital in Berea determined that the cause of Sara’s abdominal cramps was an enlarged liver and ill kidneys. Her blood pressure was an alarming 198 over 108. She had all of the symptoms of HELLP Syndrome, a condition related to preeclampsia, a dangerous hypertension in pregnant women, for which the cause is unknown, and the only “cure” is to remove the baby. Sara soon found herself on an ambulance racing across town to MacDonald House at University Hospitals Case Medical Center in University Circle.

“I learned that I was giving birth about eight hours before I did,” recalls Sara.

Performing an emergency C-section, the obstetrician removed Olivia from the comforts of her mother’s womb, just 25 weeks into her gestation (full-term gestation is 37 to 40 weeks). She weighed 680 grams (or one pound, eight ounces), and measured one foot. She was whisked to Rainbow’s NICU (commonly pronounced nick-you), while her mother remained at MacDonald for several days, so that staff could attend to her serious but temporary condition, from which she has since fully recovered.

On a Tuesday afternoon in early April, Olivia is all wrapped up inside an isolette, a plastic surrogate womb that faintly resembles a terrarium. She’s in Nursery Two in the NICU, a room with stations for six neonates, all of whom lie in covered isolettes like Olivia’s, or in open plastic cribs.

In place of an umbilical cord, Olivia is tethered by thin wires to a variety of monitors that chart her heart rate, temperature, breathing rate, oxygen saturation and blood pressure in waves and LCD numbers that fluctuate constantly. An ongoing symphony of beeps, dings and pings – sounds that resemble the noises a car makes when you leave the door open – lets nurses know when something is wrong.

Olivia’s skin is so thin it seems transparent, revealing her little muscles and blood vessels. Her body is perfectly proportioned, detailed down to her exquisite, miniature fingers. Her thumb appears poised to suck, but her respirator tube is in the way.

She’s tucked into rolled-up material to keep her from rolling around, and her head is braced so she cannot accidentally disconnect herself from the precious oxygen that her lungs still struggle to inhale on their own. On a recent Sunday, Olivia gave her mother the second most frightening moment in her life. While Sarah was “kangarooing” her – letting the baby rest skin to skin, on her mother’s chest – Olivia yanked out the respirator tube. She stopped breathing and turned blue. Sara cried quietly, trying not to give her daughter any indication of fear, as a team of respiratory specialists, physicians and nurses converged almost instantly.

It’s just one more up-and-down moment on a NICU parent’s roller coaster ride. Doctors, nurses and a social worker warned her it would be like this, but that hasn’t made it any easier. “I just feel a little more prepared now,” Sara says, after more than a month of daily visits with her daughter.

“We’re asking a baby’s organ systems to work earlier than they normally would,” explains Dr. Fanaroff. “So it’s frustrating for the parents. ” Of the disorientation suffered by parents who suddenly find their baby hooked up to wires and tubes with lights flashing and strange noises, Fanaroff says, “It feels like an alien experience.”

In the womb, Olivia’s lungs would grow, but they wouldn’t need to oxygenate and ventilate her body. Her stomach wouldn’t need to absorb food. Most important, her immune system isn’t fully developed, so she and her fellow neonates are acutely prone to infection.

“We try as much as possible to simulate environmental conditions in utero,” says Dr. Richard Martin, director of neonatology at Rainbow. “But it’s a little naïve to suppose we can do that entirely, because of the physiologic demands that are so different postnatally.”

While Sara’s assessment of her experience thus far is simply “overwhelming,” several members of the NICU medical team say she’s made a great effort to inform herself by asking questions of the nurses who provide Olivia’s primary care, and reading all of the information she’s been given, including her “bible,” The Preemie Parents’ Companion by Susan L. Madden, the mother of a preemie.

“Sara is very willing to do whatever will benefit Olivia,” observes Amy Eliason, a pediatric social worker at Rainbow who will serve as Sara’s sounding board and advocate until Olivia is discharged. “I’m amazed that she’s handling herself so well under all of this pressure,” says Sara’s mother, Joy.

They’re especially impressed, they add, considering Olivia’s father has chosen to be minimally involved in his daughter’s care, despite the fact his parents and sisters have all supported Sara and Olivia.

In the corner of Olivia’s isolette by her head, Sara has taped a photo of herself with Olivia’s father. “She doesn’t need to know we’re not together,” she says. “She just needs to know that mommy and daddy love her, and want her to get healthy.”

A tiny teddy bear, Sara’s first gift to her daughter, stands in the corner near her feet. It’s wrapped in a plastic biohazard bag to protect it from the high humidity and heat in the isolette.

“She’s coming from water, 100 percent humidity in the womb,” says nurse Amanda McGuiness, one of Olivia’s primary care nurses. The baby’s thin skin, she adds, allows moisture to evaporate quickly, making Olivia susceptible to dehydration. Her previous isolette disbursed an even higher concentration, roughly 75 percent humidity, than her current neonate residence. It also featured a built-in scale, because she was too tiny to remove for weighing.

As a primary care nurse, McGuiness provides regular assessments of Olivia’s vital stats, feeds her, changes her diapers, and essentially watches over her. Because she is now able to ingest and process larger feedings, there is more output, so she needs a bigger diaper. It’s half as big as she is. Sara is keeping one of the doll-size diapers, about the size of a napkin, as a keepsake to show Olivia some day. “Probably before her first date,” Sara quips.

This afternoon, McGuiness completes her thorough assessment and chats with Sara as they wait for the respiratory team to remove Olivia from the ventilator, at least until she needs it again. The goal is to let her lungs work for as long as possible for themselves so they eventually won’t need the mechanical stimulation. The team was on its way, but was called off to help a new patient in the NICU, a boy whose weight of 500 grams makes Olivia seem huge, relatively speaking, since today she tips the scales at 1,120 grams (or two pounds, seven and a half ounces), nearly twice her birth weight. Accordingly, Sara celebrates any such progressions, faithfully recording them in her My Early Arrival Journal, a gift from Eliason, including Olivia’s minuscule feet and handprints at 38 weeks.

Despite all of the tubes, wires and wrappings, Olivia will not be held down. “She’s been a real wiggle worm today,” McGuiness says. “She’s not very patient, this one.” Sara remarks, “Wonder where she gets that from?” Several times, Olivia has even managed to perform a preemie push up, in which she puts her weight on her hands and sticks her butt into the air, as if trying to stand up in the isolette. Having observed these antics, Joy now calls her first granddaughter the Pilates Princess.

That afternoon, Dr. Fanaroff arrives to see whether Olivia’s ready for extubation, or removal of the ventilation tube from her throat. He informs Sara that the team should be ready soon.

Dr. Fanaroff is a walking, talking beacon of hope for NICU parents, because he was born into the very same unit 37 years ago. The story gets better: His father, Dr. Avroy Fanaroff, is now chairman of pediatrics at Rainbow, and is, along with Dr. Martin, considered a “godfather of neonatology” for the advances they have pioneered in the field. The discipline was still new when his son struggled alone in a unit from which parents were excluded. The elder Fanaroff later changed all of that, revolutionizing the paradigm for neonatal intensive care by encouraging parents like Sara to spend as much time with their children as possible.

Olivia has also received another recent innovation: a treatment of inhaled nitric oxide to improve her chances of surviving pre-maturity without chronic lung disease or respiratory problems like asthma. Dr. Martin led the national study on the short-term effects, and Rainbow’s currently completing the long-term benefits study. Though still a couple of years away from the final results, Dr. Martin says he is “cautiously optimistic” of its efficacy.

Under Dr. Martin and the elder Fanaroff ’s leadership, Rainbow recently began construction of a new NICU adjacent to the state-of-theart, 44-bed Neonatal Transitional Care Unit on the fourth floor. The transitional unit, completed five years ago, is a step-down facility that provides a homey setting in private rooms where neonates move to prepare for discharge. When finished, the new 40-bed unit will allow parents to stay in private rooms with their children.

Thanks to a $7 million gift from the Elizabeth Prentiss Foundation, Dr. Martin says, the new NICU, with augmented diagnostic and surgical capabilities, will also become a model unit for other medical facilities. “We will have a world-class facility that matches the reputation of our staff and research capabilities,” Dr. Martin states of the unit, which should open next summer.

By late April, Olivia’s preemie Pilates – combined with her NICU care – has paid off. Her daily weighin reflects a whopping two-pound, 13-and-a-half ounce gain on her 15-and-a-half inch frame. She has been switched from the ventilator to a continuous positive airway pressure, or CPAP, respirator, which more gently introduces oxygen through a device attached to her nose. A little more weight, a little less need for intensive support, and Olivia can graduate to the transitional care unit.

“She’s really turned that corner, and is starting to do well,” says Dr. Fanaroff.

Sara, who has returned to her customer service job for a trucking company in Berea, is finally able to hold her daughter in the crook of her arm for short periods of time. Gazing lovingly into her daughter’s face, which she’s only seen up close a few times, Sara says, “I still hate that I can’t just take her home.” She plans on taking another six weeks of maternity leave when Olivia comes home.

Though she’s the beneficiary of all the assistance that science and medicine delivered by deeply compassionate nurses and doctors can offer, Olivia continues to display the innate tenacity that has allowed humans to prevail for thousands of years. That trait will help her thrive in the great big, unpredictable world that awaits her.

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