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World's smallest survivor celebrates 15 years



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Chicago Tribune

(KRT)

CHICAGO - As a room full of doctors, nurses, friends and family recently fussed over Madeline Mann for her 15th birthday, the guest of honor seemed slightly embarrassed.

"It's a little annoying," she said. "But cool too."

A top student who started last week at Conant High School in Hoffman Estates, Ill., Madeline is quick with a quip and has a passion for writing, sign language and hanging with her friends.

She is also small for her age - 4 feet 7 inches and 60 pounds, less than half the average weight for a girl of 15 - and has asthma. Otherwise, there is no sign that when Madeline was born 13 weeks prematurely, she weighed just 9.9 ounces, less than a can of soda.

Her ink footprint, which a nurse imprinted on the back of her father's hand, was a little bigger than a thumbnail. Medical literature dubbed her "the world's smallest surviving baby," a record she holds to this day.

Although Madeline defied the odds by her very survival, the more remarkable story is that she suffered none of the physical or neurological problems that often afflict such children as they grow up, according to Dr. Jonathan Muraskas of Loyola University Medical Center, the lead author of a brief update on his patient's progress in Thursday's New England Journal of Medicine.

The report points out that gestational age seems more important to viability than birth weight - although Madeline's weight equaled that of an average 16- to 17-week-old fetus, she had spent 26 weeks in the womb - and that prematurely born girls have a better chance of being what neonatologists call "a keeper."

"If Madeline were a boy, we wouldn't be standing here today," Muraskas told the crowd at the Maywood hospital, embracing the teen who once fit in his palm.

Back when their daughter was delivered by Caesarean section, the parents couldn't even envision reaching such a milestone.

"The doctors warned us about not looking too far ahead," said her mother, Robyn Leslie, 51, her eyes brimming with tears at the memory. It would be four months before the infant left the hospital, swapping an incubator and a tangle of wires for an eyelet-lace bassinet in the northwest suburbs.

But what couldn't be quantified was the girl's fierce tenacity.

"She's little," said her mother, "but she has a huge spirit."

Madeline was born on June 27, 1989. On that particular overcast day, Leslie had planned to take her first Lamaze class.

Then the mother-to-be began to hemorrhage. She was diagnosed with pre-eclampsia, a type of hypertension that made it perilous to continue the pregnancy.

"Robyn would have died," said Muraskas, director of Loyola's Neonatal Fellowship Program. "The only treatment was to deliver."

The couple named their daughter Madeline, which means "tower of strength."

"It's all pretty much a blur," admits her father, Jim Mann, 53. "All I remember is that doctor turned to me and said: `She's pink and she's peeing.' Being our first - and only - we didn't know what to expect, which was a real blessing."

It was uncharted territory for the young neonatologist, as well. When Muraskas was handed the tiny newborn, he remembers having two thoughts. The first was an expletive that can't be printed. The second? "Thank God she's a girl."

Of the 52 newborns born since 1936 with a birth weight of less than 400 grams - about 14 ounces - 83 percent were female, Muraskas notes in the journal article. Generally, girls seem more resilient and have a better prognosis.

In person, Muraskas puts it more succinctly: "Boys are wimps."

As Madeline cut into the cake, flashing a gleam of braces, she stood by the window to the neonatal unit, where her parents had logged hundreds of anxious hours, hanging on every labored breath and blip on the monitor. (The couple divorced in 1998 and are both involved in raising their daughter.)

After her famous birth, the family kept a low profile - not just because her parents are intensely private people, but because survival alone is not a complete victory. At the time, the survival rate for infants of Madeline's gestational age was 60 to 70 percent. In the early 1990s, that figure shot up to 90 percent, Muraskas said.

Despite such strides, there are still a "significant number of adverse outcomes which need to be addressed." The most common handicaps include blindness, mental retardation and cerebral palsy. Every year, some 30,000 babies are born in the United States more than three months before term.

Today's physicians have a high-tech arsenal at their disposal that was unheard of when Madeline arrived. The most significant gains include surfactant, a substance that makes the lungs - the last organs to develop in utero - less stiff, as well as new modes of mechanical ventilation.

But the new medical advances surrounding "borderline babies" also have touched off medical, financial and ethical dilemmas, including whether aggressive treatment is a heroic act or simply prolongs suffering. The decisions are never easy - and certainly "the emotionally charged delivery room is not the best place to make life and death decisions," Muraskas said.

Generally, the Loyola team adheres to the following guidelines: Upon delivery, an immediate birth weight and physical maturity assessment is performed. Most infants with vital signs present, weighing at least 500 grams - about 18 ounces - and greater than 23 weeks' gestation are resuscitated, as well as infants weighing less than 500 grams but born at 24 weeks or more.

"The difference between 23 and 27 weeks is dramatic," Muraskas said, noting that the survival rate improves by almost 90 percent. "Every hour makes a difference."

In an editorial in the journal Pediatrics this year, Dr. Jerold Lucey called for more long-term studies that follow such infants' progress over 10 to 15 years.

"Parents think we know much more than we do and can predict the future. We should admit how little we know, explain the present bleak outlook for intact survival," Lucey wrote. "There are no quick answers."

Now that 15 years have passed, Madeline's neonatologist feels comfortable ballyhooing her success.

"But the real credit goes to Robyn and Jim," said Muraskas, heralding them as extraordinary people. "Maddy just scored in the 83rd percentile for high school (entrance exams), and we doctors had nothing to do with that."

Not that there weren't some challenges along the way. Madeline received physical therapy because of her weak muscle tone and was hospitalized at age 4 for pneumonia. "She just picked up every bug," her mom said.

Because of her size, her parents sent her to a nursery school for at-risk children, and she started kindergarten a year later than her peers. But generally, she has been free of the abnormalities that are so common in this population.

And while she is certainly diminutive now, "she just deals with it," said Lauren Miller, 14, a pal since elementary school. "Maddy's not the type to say `Help me! Help me! Someone is teasing me.' She'll take care of things on her own."

On Friday, the birthday girl and her friends toured the neonatal intensive care unit, where tiny creatures with translucent skin and a downy layer of hair lie curled up under heat lamps and plastic tents, quietly defying the odds. Maddy understood, as she hadn't before, what her survival meant.

"All I could think of was, `Whoa ... I was even smaller than them,'" she said.

Her mother had a different thought.

"Every time I hear about another tiny preemie, my heart goes out to the parents, because you don't know what's waiting around the corner ... and there are no assurances," Leslie said. "You just have to know that everyone is trying their best, but after that, it's just in the hands of God."

Tribune photo by Terry Harris

Madeline Mann (center) visits Loyola University Medical Center's neonatal unit, where she spent the first four months of her life.

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(c) 2004, Chicago Tribune. Distributed by Knight Ridder/Tribune News Service.

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