Seeing little miracles, all grown up

THE BALTIMORE SUN

Johns Hopkins Hospital recently threw a party in the basement atrium of the Ross Building on its East Baltimore campus -- and Daniel Grossman was 45 minutes late. Nobody took offense. He has earned the right to be behind schedule.

The party was a premature-baby reunion that attracted more than 125 "graduates" of the hospital's Neonatal Intensive Care Unit. Thirteen-year-old Daniel left NICU (pronounced nick-you) with high honors: He is Hopkins' smallest-ever preemie, having weighed in at a feathery 360 grams, just three quarters of a pound.

Today Daniel is a wide-eyed kid with wire-rim glasses and an outgoing personality who has been known to introduce himself to hospital staffers by breathlessly saying, "Hi, I'm Daniel. I was born premature and I had a breast implant for one of my pillows."

That's true, although his nurses actually used the jelly-like silicon inserts as a makeshift waterbed.

"He was the size of three sticks of margarine," recalls NICU nutritionist Jeanne Cox, "and weighed about the same."

It's a miracle Daniel is alive. But, then, the reunion room was filled with similar success stories. Six-foot-one-inch tall Mark Bernard, 25, who lives within walking distance of the hospital, was the oldest of the returning alumni. He has come a long way -- to be precise, from 1 pound, 12 and a half ounces to 230 pounds.

Grant Swann Jr., was on hand, too, but oblivious to the face-painting, game-playing and picture-taking going on around him. Grant was born in April, two and a half months premature; perfectly healthy except for the fact that when he cried he had bone-dry eyes. His tear ducts hadn't formed yet. His grandmother, Sharon Swann, of Baltimore, says the sprinklers come on regularly now, especially when Grant's hungry.

"He eats every three hours," says Swann. "It's like having a clock."

'Babies are resilient'

Maryland has two "Level Four" NICUs (at Hopkins and at the University of Maryland Medical Center) equipped to perform neonatal surgery. They admit the most delicate patients. There are a dozen Level Three NICUs capable of handling most other at-risk premature babies. Almost all those facilities hold preemie reunions. They're a welcome release for families and NICU personnel.

"It's just a very scary, traumatic time," says Brenda Hussey-Gardner, coordinator of the NICU follow-up program at University of Maryland Medical Center, "and there's a close bond that develops."

The tough times don't end once the umbilical cord is cut. Premature babies are likely to have more medical complications than their full-term peers. Vision problems, chronic lung disease, cerebral palsy and retardation occur at higher-than-average rates. Devel-opmental and learning disorders are common.

Tibby Grossman, Daniel's father, surveyed all the commotion at the NICU reunion and noted that the room contained "a lot of tragedy," but, thankfully, an equal measure of joy. Jan Collins, a senior social worker at Hopkins, admits that not every NICU ending is perfectly happy, but they can be uplifting nonetheless.

"Babies are resilient," Collins explains, "but families are also really resilient. Families are amazing."

Tibby Grossman has a photo album at home in Columbia that contains a black-ink imprint of his son's feet, taken shortly after birth. They could be Barbie's footprints. But Grossman never realized how tiny Daniel was until a nurse brought a can of Pepsi into the NICU unit. Daniel almost would have fit inside.

Donna Grossman had to undergo an emergency Caesarian at 27 weeks -- some 10 to 15 weeks earlier than what's considered full gestation. Daniel's saving grace was that he had the chance to develop beyond the minimum viability threshold of 24 weeks. Still, he had to fight off infections, heart problems and respiratory problems, plus undergo a hernia operation.

'A normal boy'

The Grossmans visited their son in the NICU every day for four months before they were allowed to bring him home. Even so, the first time they took Daniel outside they had to wrap him in protective clothing and breathing tubes. He reminded his father of an astronaut making a space walk.

Daniel remains small for his age, but has gotten a boost from a growth hormone. He's an honors student, plays wicked drums and keyboards, and idolizes that old rock 'n' roller Jerry Lee Lewis.

"He's a normal little boy," says his father, "and I couldn't ask for anything better than that."

Hopkins' NICU is in the building next to where the reunion was held. While the party was in swing, the latest crop of babies in the 36-bed facility were struggling to gain their pink-toed footholds in the world. The NICU is like a scaled-down Lionel train village, a room filled with plastic incubators the size of microwave ovens, of stick-on heart-monitoring patches not much bigger than a thumbnail, of feeding tubes as fine as angel-hair pasta.

"Basically, being a 25- or 26-weeker is a bad way to start your life," says senior nurse Cheryl Keller.

Tibby and Donna Grossman stopped by to say hello to the people who helped jumpstart their son's life 13 years ago. Daniel held hands with his "primary nurse," Karen Frank, and stared at the soda machine his father says mesmerized him during his first, fragile days on the planet.

One NICU crib held a premature baby who is recovering from the first of what's expected to be three heart operations. Maybe that baby's proud parents will introduce him to fellow graduate Daniel Grossman at next year's NICU reunion.

For now, they've got to be content with taping an inspirational saying to the wall of his crib: "If it were not for hope, the heart would break."

Premature numbers on the rise

In 2002, the growth rate in America dipped to 13.9 births per 1,000 people, the lowest point since the government started keeping statistics at the turn of the 20th century.

Unfortunately, the percent of premature babies (defined as 37 weeks or less gestation; 37 to 42 weeks is considered full term) and low birth-weight babies (under 2,500 grams; roughly 5 and a half pounds) inched higher, to 12 percent and 7.8 percent respectively. Both sets of numbers have been on the uptick for some 20 years.

Maryland's rate of premature births is hovering around 10.7 percent. That's less than the country as a whole, but still means 7,839 preemies were born in 2001, according to the state's Department of Health and Mental Hygiene. Typically, every year more than 600 of those babies wind up in the Neonatal Intensive Care Unit at Johns Hopkins Hospital.

Dr. Hugh Mighty, chairman of obstetrics and gynecology at University of Maryland Medical Center, says one factor that contributes to the number of premature and low-weight babies is the increased incidence of multiple births, often a side effect of fertility drugs. In addition, more risk-prone women are giving birth. They run the gamut from older moms who delay starting a family to women with diabetes and other medical conditions who traditionally opted not to get pregnant.

In Mighty's opinion, however, the primary culprit is technology. Doctors have the tools to save borderline babies that previously would have been lost. Newborns weighing a mere 1,500 grams (just over 3 pounds) are a common occurrence.

"If you went back to the late 1980s, we didn't even consider those babies viable," adds Mighty.

Dr. Edward Lawson, director of the division of neonatology at Hopkins, says maybe "we don't know" why the numbers of premature and low-weight births are climbing. He's reluctant to dismiss secondary socioeconomic factors such as poor nutrition and drug use by expectant mothers.

One thing is certain: Gestation time is critical. Every day of development counts. "The maturity of skin and organs is more significant than [birth] weight," explains Lawson.

Currently, about half of all babies delivered at the 24-week mark survive. But doctors and nurses may have hit the wall as far as medical miracles go. Says Mighty, "we're testing the limits of having anything to work with."

-- Tom Dunkel

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