By Carla DeStefano
TRIBUNE-REVIEW
Monday, January 15, 2007

Days after giving birth, new mom Leigh Graves, of Penn Township, was discharged from Magee-Womens Hospital, in Pittsburgh. Recovering from a cesarean delivery, she was taken outside by wheelchair to where the family car was waiting. She and her husband, Matt, climbed inside and drove away -- just the two of them.

"It was the most empty feeling," Graves said. "We could really feel that something was missing."

What was missing was still in the hospital, where the couple's baby girl, Alison, lay fighting for her life. Born 13 weeks early, Alison weighed only 1 pound 5 ounces and depended on a ventilator to breathe.

Each year in the United States, more than 500,000 babies are born prematurely, and the number of preterm births is rising. Early delivery puts these newborns at risk, and those that survive may face lifelong challenges, including cerebral palsy, chronic lung disease, mental retardation and other developmental disabilities.

Graves' pregnancy ended too soon because of preeclampsia, a condition that can cause high blood pressure, swelling and other serious health risks for an expectant mother, as well as problems for her baby. Mild cases may require only bed rest, but Graves' symptoms were more severe.

Although she was monitored closely through her pregnancy, very little could be done to prevent an early delivery: The mother's blood pressure was rising, the baby's heart rate was abnormal, and both lives were in danger. Doctors decided to deliver baby Alison at only 27 weeks gestation.

Preeclampsia affects about 5 percent of pregnant women, but it is just one of many reasons for a premature birth. According to the March of Dimes, in Pennsylvania each week 326 babies are born preterm -- before 37 weeks of pregnancy have passed.

Some mothers know they are at risk for a preterm birth; others may never know why their babies were born too early. It's not easy for any of them, or for their infants.

"Preemies are not just smaller," said Kelly Fraasch, associate director of program services of the March of Dimes, and the mother of a premature baby.

"Many times, these are babies that you can see through. You can see their organs. They are fighting every day -- and some of them survive and some don't."

Baby Alison continued her fight. Eventually she was able to breathe on her own, and at a hearty 4 pounds she was able to go home.

She had been in the hospital for 103 days.

While Alison struggled, her family suffered through emotional turmoil.

"I knew the reason she was born early was because of my health, but I still felt guilty," Graves said. "For the whole first two weeks, I was concerned that my husband was going to blame me because she was born so early."

That kind of mental and emotional pain is one of the hidden hardships of prematurity, said Dr. Robert Cicco, a neonatologist at the Western Pennsylvania Hospital.

"The one thing that is not thought of enough in dealing with prematurity is the impact on the whole process of a family becoming a family," he said. "No one whose pregnancy ends early imagined that it was going to be that way. It didn't end the way it was supposed to.

"Even though we've done worlds of good stuff to get over the medical issues of these babies, it is still a huge emotional crisis for families. It's something that many families might not be able to get over, and they continue to recall this experience later."

Cicco said it's important that medical staffs remember the distress parents face and take time to comfort them.

"For every minute I spend addressing a child's medical problems to the parents, I find myself spending a half hour addressing the family about what they are going through," he said.

The March of Dimes sees a need not only to continue programs that educate pregnant women about prematurity, but also to support families affected by a preterm birth.

In addition to its fundraising efforts, Fraasch said the organization has "mission families" who have been through the hardship of having a preemie and who can offer support.

The March of Dimes also holds special events, such as scrapbooking nights, where families -- including those who have not yet been able to hold their fragile children -- can create cards and keepsakes with pictures they've taken in the hospital.

While medical advances are saving the lives of preterm infants every day, the rate of prematurity continues to rise in the United States, according to the March of Dimes. It estimates the rate of preterm births has risen by more than 30 percent since 1981.

One reason: Technological advancements and new neonatal treatments are saving the lives of infants who might not have survived just a few years ago.

Medically assisted pregnancies also may be nudging the numbers higher. Use of fertility drugs and other treatments often lead to multiples, increasing the risk for early delivery.

Another factor may be an increase in the number of pregnant women who smoke or who inhale secondhand smoke.

"We don't have the 'a ha' answer as to why babies are born prematurely, but we have all these little things that may indicate it," Fraasch said.

In the 1980s, research funded by the March of Dimes led to the development of an artificial surfactant, a substance that allows a premature baby's delicate lungs to function properly. That therapy was a major breakthrough in saving the lives of many preemies, who often experience respiratory distress.

Now the focus is on fighting prematurity before it happens.

A study is currently under way at Magee-Womens Hospital, where researchers are taking a look at socioeconomic factors such as genetics, race and diet.

The 5-year, $2.8 million study is funded by a grant from the National Institute of Child Health and Human Development.

"We are really hoping that we can find a lot from this study, not just to help only Western Pennsylvania, but to lead us closer to finding answers for everywhere," said Debbi Lenhart, of the Magee-Womens Research Institute and Foundation.

"You always want to find a cure for something, but it's always best to prevent it if possible. As much as we know about prematurity, we still don't know what causes it. We hope to get closer to the answer."

Graves and her family -- which now includes daughters Amanda, 5, and Anna, 2 -- share that hope. She said one of the highlights of each year is her participation in the March of Dimes' biggest fundraiser, WalkAmerica.

Joining her for the annual walk is Alison, who is now a healthy 9-year-old.

Carla DeStefano can be reached at cdestefano@tribweb.com or (724) 837-6681.