THE VIRGINIAN-PILOT
Copyright (c) 1995, Landmark Communications, Inc.
DATE: Monday, July 31, 1995 TAG: 9507310029
SECTION: FRONT PAGE: A1 EDITION: FINAL
SOURCE: BY MARIE JOYCE, STAFF WRITER
LENGTH: Long : 154 lines
Emanuela Johnson is sick.
The little girl sits on the edge of her bed, clutching a plastic bedpan in 3-year-old hands, vomiting.
Maria, her mother, is sick, too. But she is dashing around the little hospital room on elegant high heels, stooping to wipe up the mess, then leaning over her daughter to hold a cool washcloth to her forehead and coo in a rich Italian accent, ``OK . . . stop it now . . . try to breathe . . .''
In this Norfolk family of three, only 9-year-old Anthony is not sick. He crouches between the television set and the wall, head in his hands, sinking out of sight.
On a hot, sunny afternoon, they are effectively prisoners in an isolation room at Children's Hospital of the King's Daughters. Emanuela has picked up a drug-resistant bacteria. The bug got in her body through a hole in her chest where a tube feeds into her bloodstream all the medicine she must take. She can't fight the bacteria because AIDS has destroyed her immune system.
She can't leave the room because she might spread the germ to other people. Her mother has to stay with her. And Anthony has to stay with his mother, because she can impose on friends for baby-sitting only so much.
Nobody can visit, either, unless they put on yellow gowns and rubber gloves to keep them from picking up and spreading what Emanuela has.
In the world of AIDS epidemiology, the Johnsons represent a small but growing cluster of 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.
A recent public health survey showed that, among all 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. In Norfolk, 4.2 out of every 1,000 women giving birth last year had HIV. That's almost four times the state average. Local AIDS workers believe that as many as half of those women are not using intravenous drugs or engaging in other high-risk behavior.
Thomas T. Rubio is Maria's and Emanuela's doctor, a specialist in pediatric infectious diseases at Children's Hospital who deals with AIDS cases. A few years ago, he might see a new pregnant AIDS patient once every few months.
Yesterday, he saw four.
In addition to the difficulties of coping with a fatal disease, these mothers must confront the terrible job of finding someone to raise their children after they die.
That is the case with Maria, who is gearing up to take the issue to court. She does not believe her ex-husband can care for the children, and she's trying to get her sister-in-law named guardian.
``This is the last battle. I want to take care of this now that I am physically able and mentally able. Then I can relax and take care of Emanuela and my son,'' she says.
She thinks she got the disease from a man she was involved with about 11 years ago, when she lived in her native Italy. Her disease wasn't diagnosed until after she had met and married another man, an American, and they had Anthony. Neither her ex-husband nor her son picked up the virus from her.
She did not want to have another child. But she doesn't believe in abortion, so when she became pregnant, she hoped that this baby, like her first, would escape. About two-thirds of the babies born to mothers with AIDS don't get the virus. Emanuela did.
Mother and daughter have advanced AIDS - their immune systems are effectively gone. Emanuela has already developed a lot of infections and complications. Rubio said she probably has a few months left.
Maria might have several years, Rubio says, if she's lucky and if she watches her health.
But she doesn't. ``She's not taking care of herself,'' says Ann Brown, a social worker at Children's Hospital who works with the Johnson family. ``She lives for her children.''
That's typical of AIDS mothers, said Brown. She deals with a lot of women who bring in children for doctor appointments while skipping their own.
Maria gets disability aid, so she doesn't have to hold a job outside the home. But caring for two children, especially a chronically sick one, is more than full-time work.
``I'm a nurse, I'm a doctor, I'm a mother, I'm a patient,'' she says with a little laugh.
She does have something of the nurse in her, in the practiced way she takes a syringe from the hands of a student nurse and inserts it into the feeding tube in her daughter's stomach. Emanuela has diarrhea and can't eat solid food anymore.
But before Maria can get the syringe in, Emanuela turns old and sober eyes on it. ``It won't fit in that, Mama,'' she says matter-of-factly.
She's right. The syringe is too big.
The nurse gets another one.
Emanuela has shocking red, curly hair, a magnetic presence and the vocabulary of an older child. She submits to some procedures, though not all, with resignation. The syringe is one - if you scream, Emanuela explains, it makes the vein go away. And that's true, a nurse confirms; it can make the muscles tighten so it's harder to get at the vein.
The nurses dote on her. And when she must undergo a procedure she really hates, she summons her favorite nurses. ``Hold my hand, please! Hold my hand!'' Holding hands makes it easier to take. And when her empty stomach hurts, as it often does, lying in her mother's arms makes her feel better.
Maria believes fiercely in rituals that she says have protected her from getting sick, scraps of normalcy she uses as shields - Anthony making the honor roll in third grade, playing with the family dog, or swimming. Emanuela clutching an ET doll she got on a trip to Disney World, courtesy of the Make-A-Wish Foundation, a group that fulfills wishes for dying children.
Eating right. Keeping a positive attitude. Maintaining her appearance. Maria never leaves the house without makeup. Even when she visits her daughter in the hospital, she is impeccably dressed.
She trusts most the firm obligations of motherhood.
``It's a lot of work to keep this family like a real family,'' she says, ``(But) the reason I'm alive is because of the kids. They help me to cope. I can't afford to get sick.''
Still, she admits that she tires more easily than she used to. Before she got the virus, she was the sort of person who never got the flu. And Dr. Rubio knows how frequently she calls, worried that a fluctuation in weight signals the beginning of the end.
Events conspire against normalcy.
Anthony had spent most of the day sitting on the window seat in the hospital room high on the seventh floor, where he could see the cars on Colley Avenue flashing in the sun. Even if Maria could have found someone to watch him, she says, a family needs to spend some time together.
The room is small.
He and Emanuela fought over the one chair in front of the TV set. He had to give way - when you're older, you have to be the responsible one. They made faces at each other behind their mother's back.
Then a doctor came in to look at Emanuela's infected catheter site. She screamed when they pulled off the tape holding the tube to her chest. So Anthony crawled between the TV set and the wall and dropped his head into his hands.
All the excitement made Emanuela throw up, and Anthony sunk lower and lower, till he was hidden below the level of the bed.
The surviving child can grow very angry as he watches a parent or sibling fade, said Brown, the social worker. ``The sicker they get, the worse it gets, because it gets more and more real.''
It's a long time before Maria notices Anthony is missing, preoccupied as she is with Emanuela's crises.
When she does finally cast her gaze around for Anthony, she dashes for the door even as she looks back over her shoulder, hand outstretched toward her daughter on the bed. ``Emanuela, just a second - I'm looking for your brother
Anthony's voice rises from the floor behind the bed. ``I'm here.''
Maria jolts to a stop. She walks around the bed and looks down at her son, sitting against the wall.
``This isn't the right way to get attention,'' she says.
``I don't want attention. I'm just mad at my sister,'' he replies.
Maria drops into a nearby chair, still looking at Anthony. He has to be a big boy, she tells him.
``We just try to work things out.'' ILLUSTRATION: Color photo by BILL TIERNAN, Staff
Maria Johnson cares for her daughter Emanuela in an isolation room
at Children's Hospital of the King's Daughters. Both have advanced
AIDS. Emanuela cannot leave the room and no one can enter unless
they don protective gowns and gloves.
KEYWORDS: AIDS by CNB