(From New America Media)

By Viji Sundaram

 
PALO ALTO, Calif.—Kevin Bracy calls July 9, 2001, a “bittersweet” day—sweet because his wife delivered their son, Kobe; bitter because he was born three months premature and weighed only 2.5 pounds.

The birth of their second son exactly four years later quickly turned into grief for the couple. Kaleb, four months premature, weighed less than a pound and lived only an hour.

“As a dad,” Bracy told the gathering at Stanford University’s Li Ka Shing Center on March 30, “I’ve been in denial.”

Bracy was speaking at an event to launch a collaborative venture between the March of Dimes, a national nonprofit working toward the health of babies, and Stanford Medical School to shed light on one of the most elusive of medical mysteries—why some babies are born prematurely.

“Premature birth is common, serious and costly,” March of Dimes President Jennifer L. Howse declared.

One in eight children in the United States is born prematurely. Preterm birth is the number one cause of infant mortality.

Many preemies who survive past infancy face lifelong health problems, Howse said, at a cost to society fo $26 billion a year.

“So we have an economic stake in solving this problem,” she said, adding: “The cost to families can’t be measured.”

The March of Dimes has contributed $2 million upfront toward the launch of the Prematurity Research Center and will provide support for the project through 2020.

The team will include about 30 investigators from many disciplines, including genetics, robotics, biology and pathology, said Dr. Atul Butte, a professor of pediatrics and computer science and one of the lead researchers. Butte also has a daughter who was born prematurely—at 28 weeks, or about three months early—and is now a “spunky 8-year-old.”

Kobe Bracy has had a rougher time of it. He spent the first two months of his life in an incubator and came home when he was just five pounds. He and his parents have been in and out of hospitals ever since.

“Even with health insurance, we get six-figure doctors’ bills,” his father said.

Now 9, Kobe has been diagnosed with intestinal neuronal dysplasia (IND), a condition that causes chronic severe constipation. He also has colitis, another disease of the intestine that causes abdominal pain and bloating, as well as a constant urge to defecate.

The pain is so severe that a couple of months ago, the Bracys took their son out of school and began home-schooling him.

Kobe has the scars of three surgical incisions on his abdomen. He wears an external pouch that collects his intestinal waste because his large intestine is incapable of safely processing it.

Despite the serious health risks, doctors don’t know the cause of premature birth in nearly half of the cases.

“Mothers for no apparent reason go into labor early,” said Dr. David Stevenson, a neonatologist and professor of pediatrics at Stanford. “Our goal is to test new hypotheses and make discoveries that will reduce premature birth,” he said.

Recent studies seem to indicate that African-American women have higher rates of premature births than women of other races. Stevenson said causes could include genetics and biology, as well as  environmental factors.

Chronic stress is also believed to contribute to preterm birth. Psychological or physical stress leads to the production of a stress-related hormone—corticotropin-releasing hormone, or CRH—which can stimulate other hormones and trigger contractions and premature delivery.

Bracy is African American; his wife, Jessica, is white. Neither of them, he said, had the risk factors associated with parents of premature children, including stress, lack of education, or poverty.

He said he is hopeful that the March of Dimes initiative will help identify the causes of preterm births that remain a mystery for families like theirs.

“I just don’t want any other family to go through what we are going through,” he said.