It was 3 a.m. when Christi Hayes, the dazed new mom of a 1-pound, 6-ounce baby girl - delivered prematurely to save her mother's life - stumbled upon her "lifeline."
On the Internet.
Preemie-l, a cyber-support group conceived in Australia by the parents of a premature boy, was a great source of medical information for Hayes and the only place she could share a wild spectrum of sensations - fear, awe, disappointment, relief, guilt, grief - and be understood.
"It was phenomenal," says Hayes, a 33-year-old Miami lawyer. "A modern miracle."
When her baby's red blood cells began dying before he was born, 34-year-old Trish Brown of Daytona Beach, Fla., tracked down a doctor who pioneered a treatment for RH disease.
On the Internet.
Brown's son, who recently turned 1, had four in utero transfusions before his premature birth and six more in the first few months of life. "Those transfusions," says Brown, "saved his life."
Laura Biddle-Bruckman, confined to a hospital bed during her pregnancy, had one request of her social worker and doctor: Get me a computer!
"The Internet," says Biddle-Bruckman, whose baby was born 12 weeks early, "has been a godsend."
All over the world, in one huge cyber-family, women who need information about rare problems in pregnancy and premature birth are looking it up. Internet searches on "pregnancy" or "parenthood" yield thousands of entries. Some are nonprofit sites such as Preemie-l; others are commercial ventures such as Baby Zone, an ad-driven site created by a Hallandale, Fla., businesswoman.
Cyber-moms say the Net serves several crucial roles: It's a quick, reliable way to gather often obscure information and it's a safe, nurturing arena of empathy and support. And it can be anonymous, for those who prefer it.
"Unless you go through it, you can't imagine what it's like," says Debbie Aleman, 32, of Pembroke Pines, Fla. After suffering two miscarriages, Aleman endured a difficult pregnancy, delivering Sienna 14 weeks prematurely. "It's just amazing - the support, the friendship, when other people know what you're going through, what you're feeling."
The Preemie-l site - home.vicnet.net.au/garyh/preemie.htm - is a sort of "Everything You Never Wanted to Know about Premature Birth but Have to Ask." In addition to an e-mail list, the Preemie-l site features a discussion forum, a newsletter, personal stories of members, a comprehensive bibliography and links to other resources. There's also a Guardian Angel section, in memory of the babies who didn't make it.
Aleman said Preemie-l was especially helpful when she and her husband, a police officer, brought Sienna home. "That first week, every time I had a question I would go running to the computer. Maybe Sienna was hiccuping. A few hours later, I would be bombarded with answers and advice."
Today, Sienna is 18 months old and Aleman finds herself largely on the other side of the tunnel. "I feel like I'm helping other people now," she says.
The Internet led Hayes and Brown to other women who had suffered with their extremely rare conditions. Hayes was diagnosed with HELLP syndrome, a dangerous pregnancy disorder that forced doctors to deliver Macy more than three months early to save Hayes' life. Hayes has chatted with other survivors, gathering anecdotes to help her decide whether it's safe to have more children.
And as a huge red birthmark disfigured her tiny daughter's face while she lay in neonatal intensive care, Hayes hopped on the computer and found a national expert in strawberry hemangiomas, a West Coast physician who counseled her over the phone. Macy's hemangioma was removed in delicate surgery.
Brown corresponded with six women with RH disease, which occurs when a baby inherits RH-positive blood from his or her father and has a mother with RH-negative blood. Brown, like most women in her situation, had been treated after the birth of her first child with an injection to prevent her from developing antibodies that would endanger future children. For 99 percent of women, the injection works. For Brown, it did not.
"RH sensitization is almost obsolete; it's not something people deal with a lot anymore," she said. "It was nice to be able to find these people."
The Web sites aren't always so intense.
Hallandale businesswoman Jeanine Bednarczuk, 31, was pregnant with her first child Nadia, now 15 months old, when she launched Baby Zone. The site - www.babyzone.com - gets 800,000 page views a month. Originally intended as an index for pregnancy-related information, it has grown into its own little cyber planet, with message boards, live chats, photo contests and catalogs of baby-related items.
"We take information and we organize it so people can find what they're looking for really easy," said Bednarczuk, who has hired five employees.
As her daughter Nadia grows, Bednarczuk plans to launch Child Zone, which will focus on issues relating to growing children.
Women like Hayes and Aleman are grateful to find help.
"Before I got involved with this, I thought the Internet was something that didn't hold anything for me. I just saw a bunch of junk," Hayes said.
"But when I had a real need, it really did change my life."
Pub Date: 11/09/98