By the time you read this, OliviaGrace Soppi-Huntley will probablybe resting comfortably at home in hercrib, under the watchful gaze of hermom, Sara Huntley. Exactly whatyou'd expect for a June baby, right?Thing is, little Olivia entered theworld a few months early. Sunday,February 25, at 3:04 a.m. to be pre-cise.

She then spent the first fewmonths of her natural gestation in anassortment of artificial wombs at theneonatal intensive care unit, orNICU, on the second floor of

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University Hospitals Rainbow Babies& Children's Hospital. The unitboasts the best survival rates for high-risk newborns in the United States,according to data from the NationalInstitutes of Health-sponsoredNeonatal Network medical centers.

"No one ever wants to be aneonatologist's patient," says Dr.Jonathan M. Fanaroff, neonatologistand one of22 attending physicians inthe NICU, which admits more than1,000 newborns annually."By defini-tion, it means there was somethingabnormal."

Olivia's early arrival started theafternoon of February 24, when Sarawoke from a nap to experience whatshe considers the most frighteningmoment of her first 27 years. Aftereating a bowl of cereal, she feltincreasingly intense stomach pains,which she, still being more than threemonths away from giving birth, mis-took for indigestion. Antacid and apiece of bread to absorb stomach acidfailed to help.

When the discomfort became"really horrible," she called her

NorthernOhioLive June 2007

mother, Joy, who lives nearby inBerea, where Sara grew up andbought her own home. Mom quickly

diagnosed that it was time to callthe doctor.

The emergency department staffat Southwest Hospital in l3erea deter-mined that the cause of Sara's abdom-

inal cranlps was an enlarged liver andill kidneys. Her blood pressure was analarming 198 over 108. She had all of

the symptoms of HELLP Syndrome,a condition related to preeclampsia, adangerous hypertension in pregnant

women, for which the ca use isunknown, and the only "cure" is to

remove the baby. Sara soon foundherself on an ambulance racing across

town to MacDonald House atUniversity Hospitals Case MedicalCenter in University Circle.

"I learned that I was giving birthabout eight hours before I did,"recalls Sara.

Performing an emergency C-sec-tion, the obstetrician removed Olivia

from the comforts of her mother'swomb, just 25 weeks into her gesta-tion (full-term gestation is 37 to 40

weeks). She weighed 680 grams(or one pound, eight ounces), andmeasured one foot. She was whiskedto Rainbow's NICU (commonlypronounced nick-you), while hermother remained at MacDonald

for several days, so that staff couldattend to her serious but temporarycondition, from which she has SIncefully recovered.

+++On a Tuesday afternoon in early

April, Olivia is all wrapped up insidean isolette, a plastic surrogate womb

that faintly resembles a terrarium.She's in Nursery Two in the NICU, aroom with stations for six neonates,all of whom lie in covered isoletteslike Olivia's, or in open plastic cribs.

In place of an umbilical cord,Olivia is tethered by thin wires to avariety of monitors that chart her

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heart rate, temperature, breathingrate, oxygen saturation and bloodpressure in waves and LCD numbersthat fluctuate constantly. An ongoing

symphony of beeps, dings and pings-sounds that resemble the noises acar makes when you leave the door-open - lets nurses know when some-thing is wrong.

Olivia's skin is so thin it seems

transparent, revealing her little mus-cles and blood vessels. Her body is

perfectly proportioned, detaileddown to her exquisite, miniature

fingers. Her thumb appears poisedto suck, but her respirator tube is inthe way.

She's tucked into rolled-up mate-rial to keep her from rolling around,and her head is braced so she cannotaccidentally disconnect herself from

the precious oxygen that her lungsstill struggle to inhale on their own.

On a recent Sunday, Olivia gave hermother the second most frighteningmoment in her life. While Sarah was"kangarooing" her - letting the babyrest skin to skin, on her mother'schest - Olivia yanked out the respira-tor tube. She stopped breathing andturned blue. Sara cried quietly, tryingnot to give her daughter any indica-tion of fear, as a team of respiratory

specialists, physicians and nurses con-verged almost instantly.

It's just one more up-and-downmoment on a NICU parent's rollercoaster ride. Doctors, nurses and asocial worker warned her it wouldbe like this, but that hasn't made itany easier. "I just feel a little moreprepared now," Sara says, after morethan a month of daily visits withher daughter.

"We're asking a baby's organsystems to work earlier than theynormally would," explains Dr.

Fanaroff. "So it's frustrating for

the parents." Of the disorientationsuffered by parents who suddenlyfind their baby hooked up to wiresand tubes with lights flashing andstrange noises, Fanaroff says, "It feels

like an alien experience."In the womb, Olivia's lungs would

grow, but they wouldn't need to oxy-genate and ventilate her body. Herstomach wouldn't need to absorbfood. Most important, her immunesystem isn't fully developed, so sheand her fellow neonates are acutelyprone to infection.

"We try as much as possible tosimulate environmental conditionsin utero," says Dr. Richard Martin,

director of neonatology at Rainbow.

NorthernOhioLive, June 2007

"But it's a little naive to suppose we

can do that entirely, because ofthe physiologic demands that are sodifferent postnatally."

While Sara's assessment of her

experience thus far is simply "over-whelming," several members of theNICU medical team. say she's made agreat effort to inform herself by ask-ing questions of the nurses who pro-vide Olivia's primary care, andreading all of the information she'sbeen given, including her "bible,"

The Preemie Parents J Companion bySusan L. Madden, the mother of

a preemie."Sara is very willing to do whatev-

er will benefit Olivia," observes AmyEliason, a pediatric social worker atRainbow who will serve as Sara's

sounding board and advocate untilOlivia is discharged. "L'rn amazedthat she's handling herself so wellunder all of this pressure," says Sara'smother.joy,

They're especially impressed, they

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add, considering Olivia's father has

chosen to be minimally involved inhis daughter's care, despite the fact hisparents and sisters have all supportedSara and Olivia.

In the corner of Olivia's isolette byher head, Sara has taped a photo ofherself with Olivia's father. "Shedoesn't need to know we're not

together," she says. "She just needs toknow that mommy and daddy loveher, and want her to get healthy."

+++A tiny teddy bear, Sara's first gift to

her daughter, stands in the cornernear her feet. It's wrapped in a plasticbiohazard bag to protect it fromthe high humidity and heat inthe isolette.

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"She's corning from water, 100percent humidity in the womb," saysnurse Amanda McGuiness, one ofOlivia's primary care nurses. Thebaby's thin skin, she adds, allowsmoisture to evaporate quickly, mak-ing Olivia susceptible to dehydration.Her previous isolette disbursed aneven higher concentration, roughly75 percent humidity, than her currentneonate residence. It also featured abuilt-in scale, because she was tootiny to remove for weighing.

As a primary care nurse,McGuiness provides regular assess-ments of Olivia's vital stats, feeds her,

changes her diapers, and essentiallywatches over her. Because she is nowable to ingest and process larger feed-ings, there is more output, so sheneeds a bigger diaper. It's half as big

as she is. Sara is keeping one of thedoll-size diapers, about the size of anapkin, as a keepsake to show Oliviasome day. "Probably before her firstdate," Sara quips.

This afternoon, McGuiness com-pletes her thorough assessment andchats with Sara as they wait for therespiratory team to remove Oliviafrom the ventilator, at least until sheneeds it again. The goal is to let herlungs work for as long as possible forthemselves so they eventually won'tneed the mechanical stimulation. Theteam was on its way, but was called offto help a new patient in the NICU, a

boy whose weight of 500 gramsmakes Olivia seem huge, relatively

speaking, since today she tips thescales at 1,120 grams (or two pounds,seven and a half ounces), nearly twice

NorthernOhioLive June 2007

her birth weight. Accordingly, Saracelebrates any such progressions,faithfully recording them in her MyEarly Arrival Journal, a gift fromEliason, including Olivia's minusculefeet and handprints at 38 weeks.

Despite all of the tubes, wires andwrappings, Olivia will not be helddown. "She's been a real wiggleworm today," McGuiness says."She'snot very patient, this one." Sararemarks, "Wonder where she gets thatfrom?" Several times, Olivia has evenmanaged to perform a preemie pushup, in which she puts her weight onher hands and sticks her butt into theair, as if trying to stand up in the iso-lette. Having observed these antics,Joy now calls her first granddaughterthe Pilates Princess.

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~sm3 '"It

NorthernOhioLive June 2007

+++That afternoon, Dr. Fanaroff

arrives to see whether Olivia's readyfor extubation, or removal of the ven-tilation tube from her throat. Heinforms Sara that the team should beready soon.

Dr. Fanaroff is a walking, talking

beacon of hope for NICU parents,because he was born into the verysame unit 37 years ago. The story getsbetter: His father, Dr. Avroy Fanaroff,is now chairman of pediatrics atRainbow, and is, along with Dr.Martin, considered a "godfather ofneonatology" for the advances theyhave pioneered in the field. The disci-pline was still new when his sonstruggled alone in a unit from whichparents were excluded. The elder

Fanarofflater changed all of that, rev-olutionizing the paradigm for neona-tal intensive care by encouragingparents like Sara to spend as muchtime with their children as possible.

Olivia has also received another

recent innovation: a treatment ofinhaled nitric oxide to improve her

chances of surviving pre-maturitywithout chronic lung disease or res-piratory problems like asthma. Dr.

Martin led the national study on theshort-term effects, and Rainbow'scurrently completing the long-termbenefits study. Though still a coupleof 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, Rainbowrecently began construction of a newNICU adjacent to the state-of-the-art, 44-bed Neonatal TransitionalCare Unit on the fourth floor. Thetransitional unit, completed five years

ago, is a step-down facility that pro-vides a homey setting in privaterooms where neonates move to pre-pare for discharge. When finished, thenew 40-bed unit will allow parents tostay in private rooms with their chil-dren.

Thanks to a $7 million gift fromthe Elizabeth Prentiss Foundation,

Dr. Martin says, the new NICU, with

augmented diagnostic and surgicalcapabilities, will also become a mod-el unit for other medical facilities."We will have a world-class facility

that matches the reputation of ourstaff and research capabilities," Dr.

Martin states of the unit, whichshould open next summer.

+++By late April, Olivia's preemie

Pilates - combined with her NICUcare - has paid off. Her daily weigh-

in reflects a whopping two-pound,13-and-a-half ounce gain 011 her 15-and-a-half inch frame. She has beenswitched from the ventilator to acontinuous positive airway pressure,or CPAP, respirator, which moregently in troduces oxygen througha device attached to her nose. Alittle more weight, a little less need

for intensive support, and Olivia cangraduate to the transitional care unit.

"She's really turned that corner,and is starting to do well," says

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Dr. Fanaroff.Sara, who has returned to her cus-

tomer service job for a trucking com-pany in Berea, is finally able to holdher daughter in the crook of her armfor short periods of time. Gazing lov-ingly into her daughter's face, whichshe's only seen up close a few times,Sara says,"I still hate that I can't justtake her home." She plans on takinganother six weeks of maternity leavewhen Olivia comes home.

Though she's the beneficiary of allthe assistance that science and medi-cine delivered by deeply compassion-ate nurses and doctors can offer,Olivia continues to display the innatetenacity that has allowed humans toprevail for thousands of years.That trait will help her thrive in thegreat big, unpredictable world thatawaits her. •

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