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Families of Premature Babies Face Lifelong Emotional, Monetary Costs

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DALLAS - Maria Hernandez is bent over the incubator at Parkland Memorial Hospital's neonatal intensive care unit, gently stroking her daughter, Alexandra, and speaking softly to her in Spanish.

Alexandra is her firstborn and, like any new parent, Hernandez has dreams. She wants Alexandra to have "a good life and a good education and to be as polite as a princess."

But, mostly, she just wants her home in her bassinet.

Born Nov. 10, Alexandra arrived after only 29 weeks in her mother's womb. Doctors delivered her early because of Hernandez's high blood pressure. She weighed 1 pound, 12 ounces.

Now the tiny, pink baby with tufts of light brown hair must stay in intensive care, monitored and cared for by a team of doctors and nurses until she is big and strong enough to go home.

"It's hard to wake up in the morning and she is not there," Hernandez says.

Nationwide, more new mothers are sharing Hernandez's experience.

One in eight babies is born prematurely, a rate that has risen 27 percent during the past two decades, according to the March of Dimes.

A full-term pregnancy is 40 weeks; any delivery before 37 weeks is considered pre-term.

While the earliest days in intensive care are the most critical, expensive and physically draining, families often face lifelong emotional costs.

"We all know families who have had a baby prematurely," says Karen Littlejohn, director of program services at the North Texas Division of the March of Dimes.

The organization recently launched a national campaign to help lower the rate of premature births by raising public awareness.

"What we don't know are the personal and economic costs to those families," she says.

No one really knows why the rate is rising, but doctors have identified some factors. They include the increasing number of multiple births as the result of infertility treatment and the increasing percentage of women giving birth after the age of 35. Health issues such as obesity, diabetes and other chronic conditions also contribute.

Premature birth and low birth weight account for 23 percent of deaths in the first month of life. It can lead to lifelong disabilities such as mental retardation, cerebral palsy, vision and hearing problems, and chronic lung disease, according to the March of Dimes.

Such births also carry hefty price tags. On average, hospital costs for premature babies are 14 times higher than for a full-term newborn, averaging $58,000 vs. $4,300. And 10 percent of all premature births have charges topping $150,000, according to the March of Dimes.

Four Dallas-area families, including the Hernandezes, have agreed to share their stories in the hopes of helping others understand the emotional costs of premature births.

The Belyeus

When Paula Belyeu of Plano was five months pregnant, she began to go into labor. Her physician, Dr. Phyllis Gee, placed her on bed rest. She tried several medications to stave off labor. And the doctor began to give Belyeu steroids to help her baby's lungs develop in case of a premature birth. Babies born at 25 to 28 weeks have about a 50 percent chance of survival. Babies born after 28 weeks have significantly higher chances - 60 to 80 percent if they are in the hands of a good nursery, Gee says. And babies born beyond 34 weeks do pretty well, she says.

But at 29 weeks, Gee could not hold off Belyeu's labor. Josiah was born weighing 4 pounds, 2 ounces. He cried even though Belyeu was told there was a chance that he could not.

African-American babies like Josiah are almost twice as likely as whites to be born pre-term, according to the National Center for Health Statistics. Studies are under way to determine why. But Gee doesn't know why Josiah was born prematurely.

"It just happened," Belyeu says. "I didn't know much about prematurity until I got to the hospital and they started sending in specialists. Then I was scared and overwhelmed."

Josiah stayed six weeks in the neonatal intensive care unit. When he came home, he had one seizure but has not had another.

During the first year, the Belyeus worried. They wondered whether their son would be developmentally delayed. They wondered whether he would be the smallest child at school. They worried about his tender immune system. They took him to specialists. And while insurance paid most of the costs associated with Josiah's premature birth, the Belyeus were responsible for $7,000. Belyeu cut back her work hours as an administrative assistant to spend more time with her son.

At the end of the first year, though, it was hard to tell that Josiah had been born prematurely. Now 4 years old, he attends preschool. His teacher says he's doing well. And he's not the smallest in his class.

"He's the biggest," Belyeu says.

But the experience has led to a decision, Belyeu says. She and her husband, Al, have decided not to have any more children.

"I don't want to put another baby through that," she says. "Another baby may not be so lucky."

The Oesterreichers

Four-year-old Kaitlin Oesterreicher carries a bucket full of stuffed toys into her McKinney family's living room. "See, I have this," she says pulling one stuffed doll out and then the next. Her twin sister, Nicole, lies quietly on the couch watching a videotape of PB&J Otter. Soon, both girls are bored and sprint up the stairs to play.

It's a normal scene, one that any parent of young children has experienced. And that is precisely why it is so joyful to their mother, Michelle Oesterreicher.

"Nothing is small for us," she says.

The twins were born March 5, 1999, at 29 weeks. Doctors performed an emergency Caesarean section after Kaitlin showed signs of being in danger. Nicole weighed 2 pounds, 8 ounces. Kaitlin weighed 1 pound, 6 ounces. The babies were whisked away to the neonatal intensive care unit at Medical Center of Plano. Nicole spent 66 days there; Kaitlin stayed for 84. Their medical bills, although covered by insurance, topped $1 million.

"Before the babies were delivered, they took me to NICU and showed me a baby who was about the size my girls would be when they were delivered. I just cried," Oesterreicher says. "You just don't want that for your kids. Our babies that we had been wanting and waiting for to be born were here. And now we didn't know what would happen next."

Even though the girls are doing fine, Oesterreicher says she still occasionally worries.

"It doesn't end when you leave the hospital," she says. "The main thing I'm thinking about now are school issues. They start kindergarten next year. It's always lurking in the back of your mind: 'Are they going to be OK?' But we try to remain on the optimistic side of it," she says.

The experience also has led Oesterreicher to volunteer at the hospital. She often speaks to moms of premature newborns. And she has become an ambassador mom with the March of Dimes.

"We travel across Fort Worth and Dallas and tell our story," she says. "People tend to think, 'Oh, I know someone who was born premature, and they turned out OK.' They just don't realize that there can sometimes be serious life problems. You sometimes have to show them that our children's heads were the size of lemons."

Myrtis Evans-Griffin and Dorcas Bell

Myrtis Evans-Griffin of Dallas remembers walking out to a baseball field with her husband 47 years ago and feeling the pang. Something was wrong. Her child was due at the end of September. It was July 2, 1956. Her doctor told her to meet him at his office. A nurse ordered her husband out. By now, Evans-Griffin had contractions less than seven minutes apart. There, in the clinic, she gave birth to her first child, a daughter, who weighed 1 pound, 6 ounces.

The doctor and his nurse placed the baby in a receiving blanket and tended to Evans-Griffin. Her husband and sister drove the infant to Parkland Memorial Hospital.

No one expected the baby to live except Evans-Griffin. "I knew her heartbeat was strong," she says.

She named her daughter Dorcas. Hospital staff placed her in an incubator and nicknamed her "Peanuts."

Near the end of September, Dorcas went home and began a routine of doctor visits.

"In December of her first year, she had bronchitis and asthma. By the time she was 2, she needed eye surgery and glasses. She had to have ongoing asthma treatments. We had to keep her away from crowds because her immune system was so low. She had flat feet and needed orthopedic shoes," her mother remembers.

Dorcas attended special-education classes and was even taught Braille since doctors thought she might eventually be blind. But she survived. Now 47, Dorcas Bell is the mother of two and the grandmother of five.

"It's been an up-and-down battle," Bell says. "From the first part of October up until the end of winter, I am sick. I've had asthma all my life and I get bronchitis. It's all related to my lung problems."

Her mother had two more premature children, but neither was as small as Dorcas. Her doctor was never able to explain the premature births.

Evans-Griffin knows that modern medicine has made great strides in treating premature babies, but she says it still seems like more could be done.

"With modern technology, we should be able to prevent this from happening," she says.


(c) 2003, The Dallas Morning News. Distributed by Knight Ridder/Tribune News Service.

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