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Internet Friends Help Save Sick Baby
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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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