THE VIRGINIAN-PILOT
Copyright (c) 1996, Landmark Communications, Inc.
DATE: Wednesday, July 3, 1996 TAG: 9607030465
SECTION: LOCAL PAGE: B1 EDITION: FINAL
SOURCE: BY MARIE JOYCE, STAFF WRITER
LENGTH: 87 lines
Like a gift, four good months were given to Emanuela Johnson.
From mid-February to mid-June, the little girl sailed through life with no significant complications from AIDS. Time to swim and visit Busch Gardens and putter around in her little battery-operated car.
Emanuela, 4, died Monday night at Children's Hospital of The King's Daughters from respiratory failure caused by a massive infection.
She and her family were profiled last July in The Virginian-Pilot. Her mother, Maria Johnson, also has AIDS; her brother, Anthony, 10, does not.
``She was loved so much,'' said Maria Johnson. ``She touched the lives of many, many people.''
Bright, articulate and old beyond her years, she lived much of her life in the hospital and learned medical jargon as she learned her ABCs. Her curly, carrot-red hair turned heads, and she ruled the hospital staff with imperious commands and warm hugs.
Her mother has made public appearances and opened the family's life to reporters to call attention to the problems of mothers and children with AIDS.
Children make up a very small portion of AIDS cases in Hampton Roads - only about 3 percent of all local cases reported through 1995.
But the Johnsons represent a growing cluster of troubling cases - women who don't engage in high-risk behavior but get AIDS from their men, and the children of these women, who sometimes get the disease from their mothers.
Last year, a public health survey showed that among all Virginia women who gave birth in 1994, those in Norfolk, Portsmouth and Chesapeake had rates double the state's for HIV, the virus that causes AIDS. Local AIDS workers believe that as many as half of those women are not using intravenous drugs or engaging in other high-risk behavior.
Maria thinks she picked up the virus from a man she was involved with years ago in her native Italy. She didn't discover it until after she had married another man, an American, and had Anthony. Neither her ex-husband nor Anthony picked up the virus from her.
She did not want another child. But she doesn't believe in abortion, so when she became pregnant, she hoped that this baby would escape. About two-thirds of the babies born to mothers with AIDS don't get the virus.
Hidden behind Emanuela's surprising maturity was the terror and need of a sick little girl.
When a bandage had to be removed, she screamed in protest, then summoned her favorite nurses to hold her hands.
She learned to dial a phone early, since it kept her in touch with her mother at night. Maria would arrive home to find 10 messages on her answering machine, recorded while she was en route. ``Mommy, I love you,'' ``Mommy, I miss you,'' ``Call me.''
Emanuela had lost many of the pleasures of childhood. She couldn't handle solid food, and even her ability to taste chocolate disappeared.
Even so, she insisted that she would start kindergarten next February, when she would have turned 5. She refused to believe she might have to wait until fall.
The hospital staff doted on her, bringing her toys and fixing her hair. Even when she was home, nurses from Children's Hospital called to wish her good night or to see how she was feeling.
Many of them were there, too, Monday evening as she slipped away. She had been moved to an intensive care unit early Monday. The nurses from 7C, her regular unit, kept her room open and visited her during the day. When she started to fail, they asked if Emanuela could be moved back to her room. Doctors agreed.
Staff members visited to say goodbye. She lay curled in her mother's arms in a rocking chair, using an oxygen mask to breathe and a morphine drip to deaden the pain.
``There was just something special about her that just drew people out and touched people,'' said Julia Wallace, a registered nurse on the unit. ``We had seen her through many hard times. I guess it was maybe just a closure for us.''
She died soon after 6 p.m.
AIDS destroys the immune system. Emanuela died because her body was no longer able to fight off infections.
Her mother has an advanced case, but she says she has stayed relatively healthy.
``I don't want to lose this,'' Maria said. ``I have to try my best . . . because I need to take care of my son. He needs me now.''
Maria is divorced and has no contact with her ex-husband. But the loss of Emanuela has been a terrible blow. Perhaps because they suffered from the same disease, they had a special bond. ``It was like the umbilical cord had never been cut,'' she said. ILLUSTRATION: Color photo by BILL TIERNAN, The Virginian-Pilot
Bright, articulate and old beyond her years, Emanuela Johnson, shown
here in a July 1995 photo, lived much of her life in the hospital
and learned medical jargon as she learned her ABCs. by CNB