From the grocery store bathroom where she first realized her pregnancy was going to be anything but normal, Deb Discenza has experienced it all in her daughter’s brief life.
Discenza’s daughter Becky was born 10 weeks early, on Sept. 7, 2003, just a day and a half after her water broke unexpectedly on a trip back from Leesburg. Doctors told Discenza to expect to spend the next six weeks in the hospital. Becky was born 30 hours later.
"I felt very numb … I was staring at this child in an incubator, (thinking) what did I do to cause this? This poor child, how do I bond with you, how do I connect with you?" said Discenza.
Becky spent the next 38 days in the hospital, and when she arrived home, it was with health monitors and oxygen machine in tow.
Life with a premature baby — or preemie — meant an entirely different timetable of development for Discenza and her husband Gregg. It also meant she could not rely on the slew of parenting magazines available.
"I noticed as I was reading parents’ magazines, I was getting continually frustrated, because they were talking about things that I just couldn’t relate to," said Discenza.
At the time, Discenza was working as publisher for an Alexandria-based technology trade publication. Several of her co-workers also had given birth to preemies, and soon the idea was hatched.
"I said I can’t imagine there isn’t a publication out there for us," said Discenza. "(We thought) If there were to be a publication, how would it go together? What would be the things I would want in a magazine? It all came together very easily."
In early July, Discenza launched the inaugural edition of "Preemie" magazine, as well as its companion Web site, www.preemiemagazine.com, which features an online community to link parents of preemies and offer information.
For parents like Julie Kipers of McLean, whose son Nathaniel was born four months early in 2000, weighing just 1 pound, 12 ounces, "Preemie" was a welcome publication.
"I think most of the magazines have articles that are based on averages, so when you read them and they say ‘At nine months, they should be doing this,’ it’s frustrating because your child is not doing any of those things," said Kipers. "You start thinking ‘Am I worse off than I think?’"
ACCORDING TO the March of Dimes’ Web site, one in eight babies born in 2002, or 12.1 percent of all live births, was born prematurely. That rate has risen 13 percent since 1992. While specific causes of premature birth are still unknown, certain genetic and demographic factors may play a role. It is likely "due to a complex interplay of multiple risk factors," according to the March of Dimes.
Susan Kohn, a pediatrician with Sleepy Hollow Pediatrics in Falls Church, said she felt equally unprepared for the challenges she would face when her son Jacob was born at 29 weeks 15 years ago.
"When you’re in that experience, you’re in your own little world," she said. "It’s a minute-to-minute kind of work, making sure your child is doing well. I don’t remember having any big support group of other mothers of preemies."
The magazine and its Web site offer preemie-targeted articles, testimonials, advice columns and the latest medical information. Even advertisements, from companies like The Preemie Store and the Mothers of Supertwins support group, focus on the preemie community. While the offices are located in Springfield, and many of the editorial advisory board members are affiliated with Northern Virginia-area health care providers, Discenza said she has received feedback nationwide. Free subscriptions number in the thousands, and she has received over 12,000 requests for shipments of copies.
"The word has spread very quickly," she said.
Kohn said she believes the need for a publication like this was already established. Now, it’s a matter of reaching as many parents of preemies as possible.
"It’s filling a void," she said.
The challenges for a premature baby continue many years after safe arrival home from the hospital. Discenza said her daughter was diagnosed with asthma recently and will likely face other health problems, such as a weakened immune system. Her daughter has had several successes, though. When Becky wasn’t walking by 18 months, the Discenzas called in a therapist and within a few weeks, Becky started to walk. As Becky grows, Discenza is confident the magazine will grow with her, to reach a new generation of preemie parents who are, like her, a little scared, and a little unsure of where to turn.
"She’s just doing phenomenally well. We just don’t know what’s ahead," said Discenza.