Researchers fight to save the region's tiniest babies

Delivered by cesarean section 11 weeks early, Quinzel Kane Jr. was so tiny that his 1.6-pound body nearly fit in his father's hand.

A week later, the child developed a leaky bowel - a common problem in underweight babies - and was rushed to St. Christopher's Hospital for Children. Over the next few months, specialists there would fight to keep him from becoming part of a grim statistic: the high infant mortality rate in pockets across the region.

Philadelphia's infant mortality rate stands among the nation's highest - rivaling Detroit's and Baltimore's - and is on par with those of Uruguay in South America and Bosnia in eastern Europe.

But the rates are high too in some suburban towns, such as Upper Darby and Norristown. And while murders grab far more attention here, the number of infant deaths is actually greater across the region.

Consider that in 2008, 396 homicides occurred in Philadelphia and its four suburban Pennsylvania counties while 410 babies died in the first year of life, state records show.

A similar pattern held true in South Jersey. Fifty-two murders occurred in Burlington, Camden, and Gloucester Counties in 2006 compared with at least 97 infant deaths, state records indicate.

While American medicine is very good at saving extremely premature babies, even the smallest ones, few inroads have been made into reducing the number of preterm births such as Quinzel, who represent the biggest reason for the region's high infant mortality rate.

Efforts to save these babies usually focus on improving medical care.

But experts say that the problem runs much deeper and that potential solutions may have to be more pervasive and long-term to succeed.

That's because infant deaths are linked to a host of social ills, including poverty, lack of education, neighborhood violence, discrimination, stress, bad housing, illicit drug use, obesity, and poor access to healthy food.

Experts say more of these factors need to be dealt with to help the smallest preterm babies survive. These are the ones who largely end up dying, said Jay Greenspan, chairman of pediatrics at Thomas Jefferson University and Nemours A.I. DuPont Hospital for Children in Wilmington.

In 2009, nearly half - 280 - of the 576 Pennsylvania infant deaths reviewed by public health officials were due to premature births.

The problem is greatest in Philadelphia, which accounts for one in four extremely-low-birth-weight babies statewide, those weighing just over 2 pounds or less at birth.

The city is also where about 255 babies died before their first birthday in 2008 - about 23 percent of the state's total.

The four suburban counties accounted for 155 infant deaths. Upper Darby and Norristown Borough were the biggest pockets of infant deaths with 13 each in 2008, state records show.

In New Jersey, 604 babies died in their first year, including 61 in Camden County - second only to Essex County, which includes Newark, at 69 - and 36 in Burlington County, according to state data for 2006, the most recent statistics available.

The strong link between preterm births and infant mortality has led to a number of efforts - largely unsuccessful - to fix the problem.

Some programs have focused on improving access to prenatal care for women at high risk for delivering babies early. These include African Americans, women who have already had a preemie, and poor women.

While logical, those efforts have not budged the numbers.

By the time a woman is pregnant, it is too late to intervene, public health experts say.

"Women come into pregnancy with enough of a load of compromised health . . . that nine months is not enough to turn the whole thing around," said Natalie Levkovich, executive director of the Health Federation of Philadelphia. "We have to look beyond the term of prenatal care."

Philadelphia Health Commissioner Donald F. Schwarz, a pediatrician, says the city is using federal and state money to act sooner.

"Rather than have a massive intervention when high-risk women get pregnant, we need to influence their lives before that," he said.

That has led to the concept of preconception care - becoming involved in the lives of high-risk women before they are pregnant to address such issues as smoking and nutrition.

The city Health Department is also launching a pilot program using federal money to create a computer network with information on prenatal care for women. Such a prenatal registry would give hospitals access to information about a pregnant woman's care before her delivery.

And Schwarz said the city's health centers "will continue to provide prenatal care and family planning . . . for free."

Still, some experts are skeptical that preconception care or even medical approaches alone would make a significant difference.

"It is simplistic to pin this on bad health behaviors and lack of access to care," said Jennifer Culhane, a leading researcher on these issues at Children's Hospital of Philadelphia and the University of Pennsylvania.

In the 1990s, Culhane undertook a state-funded study to see if focused medical approaches to high-risk women would help.

They did not.

To have a major impact, initiatives have to be much broader in scope and last much longer - possibly for generations, she said.

"Maybe these women need real job opportunity," Culhane said. "Maybe they need safe housing. Maybe they can't live in a neighborhood that is too dangerous."

She says she is concerned that in practice, preconception care could amount to an extra doctor's visit. Such a limited approach would be doomed to fail, she said.

Infant mortality and preterm birthrates are closely intertwined with poverty and race. Poor women and African American women are far more likely to have premature babies at high risk.

"The truth is that the race and ethnic differences are large and, in my opinion, shameful," Culhane said.

"Black people, very recently in our history, had a pretty crummy rap," Culhane added. "I think the legacy of that is still in play.

"It's not likely to get better in one generation," Culhane said. "We need a long-term approach."

In the meantime, the doctors, nurses, and other staff in the neonatal intensive care units (NICUs) across the region and the nation continue the fight for the survival of the smallest newborns, such as Quinzel Kane Jr.

Because he was too small to undergo surgery when he arrived at St. Christopher's, surgeons put a drain in the baby's abdomen, gave antibiotics to prevent an infection, and suctioned bile from his stomach while feeding him through an intravenous line.

They wanted to give the hole in his bowel time to heal.

Over several months, the baby's condition improved.

The doctors were able to wean him from the breathing machine a week after he arrived at St. Christopher's and he soon began to gain weight.

Then he took a turn for the worse. He contracted a bacterial infection, perhaps from the bowel perforation or maybe because his weak immune system left him susceptible.

Quinzel had to be put back on the breathing tube.

"The smaller they are, the more problems they can have, just because all their body systems are very immature," said Folasade Kehinde, one of his doctors. "It takes time to mature, and that doesn't happen as fast as it would if they were still developing in the womb."

While hopeful, Kehinde said Quinzel was not yet "out of the woods." He remains in the NICU at St. Christopher's struggling to survive and become more than a statistic.