Aimee Sprik struggled with infertility for more than two years. Finally, Connor arrived.
But her son was born 13 weeks early, and was whisked away, crying and breathing on his own, to the neonatal intensive care unit at Rush-Copley Medical Center in Aurora.
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Resources for parents of preemiesHealth information
• March of Dimes Illinois Chapter
• Illinois Maternal and Child Health Coalition
• Illinois Premature Infant Health Network
• Life after NICU, founded by Aimee Sprick of Aurora and Kelly Brinegar of Yorkville
"It offers people a place to know that they're not alone," said Sprick, whose 3-year-old son Connor was born prematurely and spent 120 days in the neonatal intensive care unit at Rush-Copley Medical Center in Aurora. "All those feelings of isolation -- you're not the only one that feels that way. We give parents a place to share their stories and ask questions."
• Papas of Preemies, founded by Joel Brens of Aurora
"My primary goal is to spread awareness about the desperate need for advocacy for fathers," said Brens, whose 2-year-old son, Jayden, was born prematurely and spent 25 days in the neonatal intensive care unit at Rush-Copley Medical Center in Aurora. "That's the cause I'm trying to champion right now. Dads have the experience of being in the NICU just like moms do."
"I wasn't allowed to see my son for four days," the Aurora woman said. "I was going out of my mind."
When she finally got to see Connor, Sprik said, "I can't even describe what it was like to see him. I thought my heart would explode out of my chest."
That day in December 2008 was only the beginning of 120 days Connor would spend in the neonatal intensive care unit, or NICU, battling complications of prematurity that threatened to steal his sight, destroy his digestive system, misshape his skull and leave him with permanent mental disabilities.
The NICU experience is something Sprik and other parents of premature babies wouldn't wish on anyone, but it's an ordeal faced by about 12 percent of Illinois parents, as one in eight babies is born too soon, according to the National Center for Health Statistics.
Now, hospitals and advocacy groups are working to reduce preterm births by forming a prematurity caucus among state legislators and pushing for action on several recommendations from a task force assigned to evaluate the issue.
The NICU staff at Rush-Copley and representatives of the March of Dimes Illinois Chapter are among those pushing for implementation of the recommendations given to legislators this month in a report by the Perinatal Advisory Committee of the Illinois Department of Public Health.
Advocates say following the recommendations will make it easier to track data about prematurity statewide, educate the public about risk factors and provide the best treatment for premature babies and their parents.
"If we could raise public awareness that this is a critical health care issue and educate women about what these risk factors are so they can manage and prevent preterm births, that would go a long way," said Louise Fazio, clinical manager of the NICU at Rush-Copley.
Despite the four-month-long hospital stay at the beginning of his life, Connor Sprik, now almost 4, is one of the luckier preemies, his mother says. Born at 2 pounds 6 ounces, he still is small for his age and has a few delays in gross motor skill development, but no other lingering health concerns. He may even have a photographic memory.
"Not every NICU story turns out how ours has," said Sprik, who co-founded a support group for parents called Life after NICU.
Many premature babies, defined as those born before 37 completed weeks of gestation, are at high risk for developing cerebral palsy, said Jennifer Toerpe, director of the Women's Health Institute at Rush-Copley. They also are more likely to die as infants, develop chronic lung disease or lose their vision and hearing.
"We know prematurity is a great burden, first and foremost, to the family members," Toerpe said. "The average medical costs for the care of a baby born prematurely is 10 times higher than for those babies that are born healthy and full-term."
Multiply out those costs and the economic burden of preterm births in the U.S. is $51,600 for each premature baby, or $26.2 billion total, in 2005, the most recent year for which statistics are available from the Institute of Medicine.
"It's not just the idea of having a preterm baby and they come out of the NICU and they're fine," said Susan Knight, state director for program services and public affairs for the March of Dimes Illinois Chapter. "Many of them have long-term health issues."
A new prematurity caucus of 12 state legislators formed by the March of Dimes and the Illinois Maternal & Child Health Coalition will hold its first meeting Tuesday, Nov. 27, in Springfield.
On its agenda will be a review of the recommendations in the Nov. 1 report by the Perinatal Advisory Committee. The report contains the "most important and pressing and evidence-based practices" that could assist in decreasing preterm births by 8 percent by 2014, the March of Dimes' Knight said.
Two ideas atop the list include linking data systems from several state agencies to create comprehensive statistics about prematurity and making sure hospitals do not perform deliveries before a pregnancy has reached 39 full weeks unless it is medically necessary.
The report serves as a starting point for conversations among legislators -- especially those in the prematurity caucus -- about how to address the issue, said Shelly Musser, associate state director of programs, advocacy and public affairs for March of Dimes Illinois.
"The idea behind this (caucus) is to have built-in champions for prematurity within the General Assembly that are educated, and they can work from the inside out," Musser said.
Suburban caucus members include Democratic state Rep. Michelle Mussman of Schaumburg and state Rep. Darlene Senger, a Naperville Republican and mother of two children born prematurely -- each weighing less than 3 pounds.
"When it comes to awareness of the consequences and the cost of a premature birth, I agree that's very important," Senger said. "(Prematurity is) a problem not only in lower socioeconomic areas, but in all areas."
Senger said she supports better tracking of prematurity data, not only about where and how many premature births occur, but also about readmittance to hospitals and the causes of early births.
Smoking, obesity, alcohol use and previous premature births are among risk factors, but some early births, like Senger's, remain unexplained. The roles played by genetics, diseases and environmental factors need more study, Rush-Copley's Fazio said.
Aside from improving data tracking and eliminating elective early deliveries, the report also suggests connecting Medicaid-eligible women who are at risk for preterm births with prenatal education; pursuing funding to coordinate care in communities where women are at high risk for delivering too early; and working to reduce racial and ethnic disparities in pregnancy outcomes.
The report leaves legislators to decide whether to pursue the recommendations through legislation or other regulatory changes within state government.
Senger said forming more public-private partnerships could be one way to decrease prematurity and fill gaps in services for prematurely born children and their parents. The creation of the prematurity caucus could be a first step toward such partnerships, Musser said.
"Clearly," she said, "prematurity is a major health issue that is all too often overlooked."