Internet Helps Parents of Preemies

Reviewed by Aman Shah, MD
From the WebMD Archives

Dec. 4, 2000 -- Parents struggling to deal with the hospitalization of a premature newborn face frustrations and challenges that they may never have imagined. They are often required to juggle jobs, the care of older children, and other responsibilities for several months before their babies are strong enough to go home.

Though it sounds paradoxical, a high-tech approach to communications may help these families cope by creating a more personalized and user-friendly experience according to a study from Harvard Medical School published in the December issue of the journal Pediatrics.

"Most parents we see would love to spend every waking minute with their child in the neonatal intensive care unit [or NICU], but that is rarely possible," study author James E. Gray, MD, MS, of Harvard's Beth Israel Deaconess Medical Center in Boston, tells WebMD. "There are many real-life realities that can separate parents from their babies, such as a need to take care of other children or the need to return to work so that parental leave can be saved for when the infant comes home."

Gray and colleagues report that parents who took part in a telemedicine program utilizing the Internet and video-conferencing technologies in the care of hospitalized very low birth weight infants were more satisfied with the care their infants received than parents who were not offered the service.

"We use telemedicine in several different ways," Gray says. "It allows families to reach into the neonatal intensive care unit while a baby is hospitalized and interact with staff and learn the skills they need to take care of the infant. But it also allows them to have virtual visits and, for example, give a virtual goodnight kiss when they aren't able to be there for real. You can't downplay the significance of this."

The study, funded by the National Library of Medicine's Telemedicine Initiative, included 26 families given access to the electronic program, dubbed Baby CareLink, and 30 families who received identical medical care but did not have the electronic support.

Families enrolled in the program were loaned computer and videoconferencing equipment for use in their homes. By accessing the secure, password-protected Baby CareLink web site, family members were provided with daily clinical updates on their infants. They could also view their babies at various points during the day, and leave messages and question for health care providers. The web site also included educational materials, information for older siblings, and detailed instruction on how to prepare for the infant's discharge from the hospital.

Researchers found that parents with access used the electronic system daily, mostly looking at their infant's home page and the photograph gallery but also taking advantage of educational materials and the opportunity to ask questions of staffers online.

"One of the big issues when we release a baby is whether the family -- and community that will be taking care of that baby -- is ready," Gray says. "Some of these babies weigh as little as four pounds when they go home. We need to know that the parents and extended caregivers are capable and confident in their ability to provide care for the infant. And this program helps us with that."

Warren B. Karp, PhD, DMD, who has run a similar program for mostly rural children with special healthcare needs, says the benefits of telemedicine services reach not only the parents, but other family members, friends and general practitioners. Karp is professor emeritus at the Medical College of Georgia in Augusta, where telemedicine has been studied for more than a decade.

"At our institution, family members routinely have to travel as much as 200 miles to visit a child in the NICU, and what generally happens is that only one parent can make the trip," Karp tells WebMD. "We have found that with home telemedicine, other family members, as well as neighbors and friends, get involved. We found that the average number of people in a room during a telemedicine visit was four. Obviously when grandma, or a neighbor, or an aunt observes the televisit, they are also learning how to care for the child, just like the parents."