‘Is My Sister Going to the Hospital Today?’ : AIDS in the Family: One Twin Is Infected, the Other Affected

Death has run hard after Ieshia Williams from the moment she was born, nearly catching her on her eighth birthday a year ago when pneumonia attacked an immune system weakened by the AIDS virus.

Tyesha Williams, born the same September day in 1980 in the same hospital, knows death one step removed. Never infected and now taller, stronger and quicker in school than Ieshia, she cannot shake her worry: “Is my sister going to the hospital today?”

They’re identical twins, but they could hardly be more different.

“I” and “Ty,” as they are called, do not share AIDS but they share its anguish. And though they differ in growth, they are close in spirit.

A Favorite Game

Clapping together, they chant the sing-song of a favorite game:

Mama got the measles,

Papa got the flu.

I ain’t lyin’,

Neither are you.

Doris Williams watches. A 51-year-old widow, she adopted the twins when their mother, barely 21, poor and jobless, gave them up.

But as Williams cares for the girls who share identical genes, no one can tell her for certain why their lives have taken such divergent paths.

“Ieshia had the bad luck, Tyesha had the good luck,” said Dr. James Oleske, medical director of the AIDS program at Children’s Hospital in Newark, N.J.

“What is amazing is that they shared bottles and the whole bit since birth,” said their pediatrician, Dr. Karl E. Russell-Brown.

Ieshia and Tyesha are among 12 sets of twins in this country known to have been exposed to AIDS, according to Oleske. In four cases, only one twin was infected with the virus.

“It’s rare,” Oleske said. “You usually expect both and that’s usually what happens.”

A tainted blood transfusion may be to blame for Ieshia’s illness, or it may have been an infinitesimal difference in the blood supply to the placenta, allowing the virus to reach her and not Tyesha before birth. The mother has refused to be tested for exposure to the virus.

Ieshia, who with her sister turned 9 Saturday, has survived twice as long as do most children with AIDS. “She has got to be God’s kid,” said Williams, a former nurse.

Ieshia was among the first diagnosed child AIDS victims in the United States. She was the trend-setter in getting some New Jersey schools to accept children with the virus.

Her survival is a bright spot amid the bleakness for families and doctors who have watched more than 700 children die of AIDS.

Children Die Faster

“Children with AIDS have more severe recurrent bacterial infections,” Oleske said. “The disease progresses much more quickly so that children will frequently die much faster than the adults.”

Oleske diagnosed Ieshia when she was 2 years old in the early 1980s when immunologists like himself first started seeing cases of what turned out to be pediatric AIDS. “We didn’t even know what to call it then,” Oleske said.

Today, with the increased knowledge of AIDS, a child like Ieshia would probably be diagnosed at 6 months.

AIDS has delayed Ieshia’s development to the point where she is in a class for neurologically impaired children, two years behind Tyesha. Oleske doesn’t think she will ever catch up to her sister.

But AIDS has not dampened Ieshia’s spirit, even though it has stunted her growth. She is only 3 feet, 8 inches tall, nearly a foot shorter than her sister who is in fourth grade.

Ieshia is a charming child with braids and a smile showing silver-capped teeth--the latter a legacy of the decay brought on by AIDS-induced complications. And yet she is ornery, feisty and tough.

When other children taunt her in school--after Williams obtained a court order to get her in--she hurls the taunts right back.

Her toughness masks her longing for kinder attention.

“I made up a father for Ieshia,” Williams said. “When she kept asking for this father, I gave her George, who was her mother’s brother-in-law. . . . I think she knows better, but she just wants to have a father.”

While Tyesha jumps rope double dutch and goes to Girl Scout summer day camp, Ieshia can only dream of such fun. “She’s too small,” Tyesha explained.

Can’t Keep Up

Instead Ieshia goes to the park with her little cousins and plays on the slides, swings and monkey bars. Her cousins play tennis, but not Ieshia.

“She doesn’t play tennis ‘cause she’s not allowed to stay in the sun too long,” said cousin Curtis Grimes.

Although no one knows for sure how Ieshia became infected, Russell-Brown and Williams believe it was through a blood transfusion she received shortly after she was born.

“They both had transfusions in the newborn period because they were premature,” Russell-Brown said. “And . . . I assume that she got infected by the virus from one of those transfusions. But again, they both had blood, and whose blood Tyesha had and whose blood Ieshia had, I don’t know. There was no other exposure.”

While Oleske does not rule out blood transfusion as the cause, he suspects that Ieshia was infected through her natural mother, although her refusal to be tested for AIDS leaves that possibility uncertain.

If so, one explanation why only she and not Tyesha was stricken might be very small differences in the blood supply to the placenta, the organ through which a fetus receives nourishment from the mother’s circulatory system.

“Sometimes . . . in one placenta you see a different flow of blood so that it has more exposure to the virus,” Oleske said.

Whatever the source of the virus, it gives the child little respite. At school, Ieshia slips into the hall to swallow AZT, a life-prolonging drug she takes every six hours.

Even at home, between the slides and the swings, she has to stop for treatment. A nurse, Michele LaPadura, comes by daily to give her therapy, chopping at her tiny chest with cupped hands to clear her lungs of mucus.

If there is an explanation for Ieshia’s survival, part of it is the good care and love she has received, Oleske said.

“Ieshia is a very special girl who is one of the few cases that give me hope and encouragement,” he said. “Some days it gets pretty bleak taking care of so many children that die. She’s one of the cases that I’m most gratified with. She has survived to the day when we now have drugs like AZT that may in fact help cure her.”

Children’s Hospital staffers have been counseling both girls. “I think to a limited degree, to their age abilities, they can understand,” Oleske said.

For Tyesha, AIDS means that she could lose a beloved sister.

“Every time a hospital stay comes,” Williams said, “you can tell the fear in her. When we go to the clinic, you can see her worrying. Then when we come back, she’s so thrilled to see us.”

Ieshia’s understanding, despite a lifetime of sickness, reflects a child’s belief in a better future. “When I grow up,” she said, “I want to be a nurse because I want to help sick people.”