A Virtual Lifeline

It's said a lot, but it's true- Having a premature baby is a very lonely experience. Support groups can be great, but distance and time limitations can keep you from joining one. Fortunately for those with Internet access, there's another option.

Its called Preemie-l and it's an online mailing list about preemies. (A mailing list, for those that don't know is a special thing on the Internet where you send in an e-mail to a server, and then that server distributes your e-mail to everyone else on the list.) The Preemie-l group has members from all around the world, and the members number in the hundreds. In addition to parents of premature babies, the members also include neonatologists and nurses who work in the NICU.

Preemie-l was started when Anne and Gary of Melbourne, Australia experienced the arrival of their son, Vincent, three months early. Finding relief from the stress of real world in the virtual cyber-space, they began corresponding with other parents of premature babies.

After setting up a homepage for Vincent and asking other parents to contact them, the people flocked to the website in droves. Anne says, "It soon became clear to us that the people who were writing to us could also be talking to each other, that our interactions could be richer and more complex." In late January of '96, they set up Preemie-list. They advertised the mailing list on several child care news groups, and ended up with eight subscribers. By the end of the first month, the list had grown to twenty members, and has just blossomed from there.

I first stumbled across Preemie-l in late May of '97, while looking for information on Preemies after the birth of my daughter, Epiphany Jean, at 23 ½ weeks in January. My first hesitant introduction was bombarded with welcomes, well wishers, and people who wanted to know more instead of trying to change the subject. Finally! A place where people knew that a preemie doesn't get out of the hospital right after they're born. A place where people understood what Respiratory Distress Syndrome is, or Retinopathy of Prematurity, or what CPAP is. People who knew how miraculous some things that parents of full-term babies take for granted really and truly are.

Anne-Mieke, mother of a 26 weeker writes, "In a very real sense it saved my sanity and helped me deal with the feelings of guilt, anger, and frustration after my son's premature birth. But at least as important, people on preemie-l provided a great sounding board to brag about my boy's development, a great source of info for all my questions, and I found some true friends here."

Preemie-l being a lifesaver is a common theme- writes Christi, mother of a 25 weeker; "When I gave birth at 25 weeks, I had never met anyone who had a premature baby. Nobody on my street or neighborhood or immediate community had. But I found preemie-l (completely by accident, websurfing in the middle of the night because I could not sleep and I didn't want to call the NICU any more frequently than every hour...) and it changed my life, because I immediately had a community of people (not next door, but through the wonder of modern technology, just as accessible) who were going through or had gone through the same experience. The same terror, the same emotions, the same jubilation, the same chaos and confusion. This list was my lifeline for the 84 days my daughter was hospitalized, and has remained an important part of my life in the succeeding months." Rita, the mother of 33 weeker twins chimes in, "I am going to be forever grateful to Preemie-l for all the support, advice, and the sense that everyone there has helped heal my emotional wounds."

The web address for the Preemie-list homepage is http://home.vicnet.net.au/~garyh/preemie.htm#list.