Beating the odds twice

Birthday: A 15-year-old shows few signs of having been the smallest baby to survive.

August 19, 2004|By Bonnie Miller Rubin | Bonnie Miller Rubin,CHICAGO TRIBUNE

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

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

A top student who starts high school next week, 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 -- 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 in Chicago, who updates his patient's progress in today's issue of The 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 a prematurely born girl has 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 that gathered for her birthday party at the hospital Friday.

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

"The doctors warned us about not looking too far ahead," said her mother, Robyn Leslie, 51. 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 of Chicago.

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

Madeline was born June 27, 1989. That day Leslie had planned to take her first Lamaze class. Then the mother-to-be began to hemorrhage. She was diagnosed with preeclampsia, 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 baby Madeline, which means "tower of strength."

"Being our first and only, we didn't know what to expect, which was a real blessing," said her father, Jim Mann, 53.

It was uncharted territory for the young neonatologist Muraskas, as well. Of the 52 infants born since 1936 with a birth weight of less than 14 ounces -- 83 percent were female, according to Muraskas. Generally, he writes, girls seem more resilient and have a better prognosis. In person, Murasakas puts it more succinctly: "Boys are wimps."

At the time, the survival rate for infants born as prematurely as Madeline was 60 percent to 70 percent. In the early 1990s, that figure shot up to 90 percent, Muraskas said.

Despite such strides, significant hurdles remain for many premature infants. The most common handicaps include blindness, mental retardation and cerebral palsy. Every year, 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 less stiff, as well as new modes of ventilation.

But the medical advances surrounding "borderline babies" have touched off medical, financial and ethical dilemmas, including whether aggressive treatment is a heroic act or simply prolongs suffering.

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

"But the real credit goes to Robyn and Jim," Muraskas said.

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.

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 premature babies.

The Chicago Tribune is a Tribune Publishing newspaper.

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