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Internet Friends Help Save Sick Baby

by Stefani Leto

Don't tell my friend Katie that the Internet isn't as meaningful as real-life, face to face contact. For her, it's literally a web of caring and support.

Katie and I met on line in a parenting mail list. She and I had some things in common, and enjoyed chatting. It turned out that we were moving near her family, and she volunteered to help us unload. A virtual friendship then became a real-life one. I enjoy being with her family and was excited when she became pregnant with her third child.

When Elliot Robert was born on January 3, 1998, she emailed me and far-flung friends and family. His arrival had been eagerly awaited, but the news was sobering. Instead of the intended happy birth announcement, the word went out: Elliot was in the intensive care unit facing a life-threatening condition.

Born with persistent pulmonary hypertension (PPH), Elliot's circulatory system couldn't work properly to move his blood to his lungs for oxygenation.

Babies with this condition need oxygen therapy; even so, 50 percent of babies with PPH die. Elliot's parents couldn't hold him; his blood oxygen level destabilized with motion. All the nourishment he received came through an intravenous tube. Messages of hope, love, and support poured into Katie's computer from friends and relatives all over the world. This circle of support also functioned as a circle of information. Without calling the s at home and disturbing their much-needed rest, friends could find out Elliot's daily oxygen percentage, how Katie and her family were doing, and what tasks remained to be done.

Gradually, a pattern evolved. Katie would call me, give the news of the day, good or bad, and within the hour, from my home computer, information flashed out literally across the globe. It is no exaggeration to say that hundreds of people were cheering for this little family.

It was easy for Katie to feel isolated, since she was spending all available time in the Neonatal Intensive Care Unit (NICU). Some days, she didn't know what the weather outside was like. She spent her days at the hospital, pumping her milk because Elliot could not yet nurse. She would emerge to find her two older children, recovering from the chicken pox, there with their own demands. Her grandmother said, "When it comes to problems, you give Job a run for his money, honey," and it seemed true for two weeks.

But every day, when she came home, she found messages of support on the computer. This might not seem extraordinary; it's easy to send a supportive message with just a click of a button. But her virtual community went a step further. Gifts for the older children, including art supplies, blocks, and books, came in boxes from all over the United States and Canada.

Cards for the family arrived in the mail daily. A care package with muffins and art supplies, sent from another email buddy, showed up. Extraordinary trust became the norm. A mutual e-buddy sent me a personal check, with instructions to do for Katie's family whatever would be most helpful with the money. One enterprising woman called a local food delivery service from Minnesota, several states away, and arranged to have dinner sent to Katie and her husband Chris at the hospital.

Jaundice, not an uncommon condition in newborns, showed up. This meant that special lights to help his liver break down the bilirubin in his system were placed over little Elliot. His eyes had to be covered all the time. He couldn't look around.

This was upsetting for his parents. He looked so alone in his little oxygen tent, and now he couldn't even see them. More frighteningly, an attempt to cure him caused a dangerous reversal in his condition.

Elliot had been managing on 40% oxygen in his little isolette, and when he was nine days old, January 12, it was moved down to 35% in an effort to cajole his circulatory system into taking over. Instead of the measure working, Elliot had a frightening setback.

His blood oxygen level dropped alarmingly. Up the supplemental oxygen level went again. The doctors repeated to the that their baby's condition was serious. He might not make it. Katie felt more discouraged than she had at any time since his birth.

Unbeknownst to her, two women had organized "Light a Candle for Elliot" the next day. Tuesday, January 13, at 10:00 pm Eastern Standard time, families lit a white candle and spent a minute sending healing thoughts and prayers to the family. From Australia to Canada to the United States, men, women, and children lit candles and prayed or meditated for the baby and his family.

One little one sang "Happy Birthday" to Elliot; while some people used candles their children made. The Internet made an international moment of support possible. People who couldn't get together and hold hands physically could nonetheless gather at an appointed time to share support and love for a sick child.

That very night, Elliot's body began to oxygenate his blood on its own. The pulmonary pressure was lessening. Katie learned that she would get the opportunity to hold and nurse her baby boy for the first time since he had entered the NICU. When she called me, she sounded jubilant. "I firmly believe that it's no coincidence," she said, "that he's improved now. So many people were thinking of him." Although afraid to hope too much, she seemed more positive than at any time since giving birth.

Celebratory and congratulatory messages poured onto newsgroups and her private email. Women whom Katie had never met in person crossed their fingers as the time for the trial nursing approached. All of this positive energy was rewarded.

Elliot nursed as though the previous eight days had not happened, as though he did not have intravenous tubes in his little body, as though he had been doing this all along. His blood oxygen level remained stable, and while the doctors were not going to make any promises, Elliot might get to go home.

When Katie's father posted an email confirming the success of Elliot's trial nursing, cheers flooded the Internet groups that Katie belongs to, as well as smaller links friends and family had established. If Elliot could nurse, then he would no longer have to have milk through a tube into his stomach. He could be held in the loving arms of his parents.

For the next 24 hours, Katie stayed at the NICU, demand-nursing Elliot in an effort to reassure his doctors that he was going to be fine at home. Unlike many premature babies, Elliot was never fed from a bottle. Katie felt like all her hard work, and the support she received from people nationwide, was finally paying off.

On January 18, 1988, Elliot came home to his family. Katie laughed that his brother, Henry, and sister, Jane, "were starting to wonder if we had made the whole 'baby' thing up!" But here he was, a real, and thankfully very alive, little baby.

Congratulatory messages continued to zoom to the family via computer, and it didn't stop there. More food came, and more cards and gifts for the older children. One woman from yet another state arranged via email for a cleaning crew to come and do the cleaning that Katie and Chris were much too busy to do.

While the trial was draining and frightening, Katie learned that people will go out of their way to help. Through the web of support formed by computer connections, her family was upheld during this ordeal. Elliot continues to grow and develop normally. When he grows up, if he ever wants to travel, there will be places all over the world for him to visit where friends will tell the story of what they did to help get him home in 1998.


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