Alex was born at 27 weeks, just shy of the 6-month mark of the pregnancy, and he weighed only 2 pounds. His parents, Jennifer and Frederic la Pape, were barely hanging on in the early days after Alex was born. "It was definitely touch and go for about 10 days after he was born," says Jennifer.
They learned that Alex would spend the next 3 months in Boston's Beth Israel Hospital's Neonatal Intensive Care Unit (NICU). "It took me 2 weeks to visit the NICU without leaving in tears," says Jennifer. "It's a catch-22 because you want to be there all the time, and at the same time it's so hard to be there."
For the la Papes, parenting now means running between home, work, and hospital, and the joys of bonding with their first-born were overwhelmed by anxiety as well as the challenge of trying to decode the complex workings of hi-tech neonatal medicine.
"It's a crash course in the care of premature babies," says Jennifer. "It's a brand new world full of conditions and terms and acronyms."
Hollis Caswell, a nurse in the NICU that cares for Alex, says that the staff gives parents a lot of information up front. "Oftentimes they understand it at the time they're talking to us," says Caswell. "But they go home and they're like, 'What did she say? I'm not really clear on that.'"
Now the la Papes have some help to stay on top of it all. Thanks to a new program funded by the National Library of Medicine, they can maintain close contact with Alex and medical staff without spending 24 hours a day at the hospital.
Dr. Charles Safron, of Clinicians Support Technology, who helped develop Baby Care Link, an experiment in "telemedicine," says that they've added technology using the Internet and allowed hi-tech to become hi-touch. "We hope that this also enables parents and extended family to bond sooner with a child who will be in a hospital for 3 or 4 months."
The most important consultations are done in person, but the la Papes can stay in touch by means of video conferencing. They also have access to a secure Web Site that gives them daily updates on their baby's progress, reliable information on treatment and medicine, and a regularly updated photo album to which family and friends have easy access.
Jennifer says that Frederic's family is on the other side of the Atlantic and her family is a few states away, so the new technology brings the far-flung family closer, allowing them to follow Alex's progress and see how he's doing.
The developers of Baby Care Link claim that the program is cost effective. They say that their research indicates that because parents are better prepared to care for premature babies, Care Link babies can go home earlier than other preemies.
"On average 2 days sooner than without the technology," says afron. "That's roughly a $5,000 to $6,000 savings in the care that this child received."
The new technology demonstrates that information is power, at least to the families and hospital staff who care for premature babies. "If parents are able to go home and really sit back and use this tool and read up on the information, they come in with better questions and are better prepared," says nurse Caswell. "They won't be as nervous every time they hear a beep."
For Alex's parents, the new technology allows them to deal with things at their own pace in the privacy of their home until they get used to whatever the newest hurdle is.
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