AIDS Infant Leaves Legacy of Love, Grief

ONTARIO, Calif. â€”  On the time line of their lives, it amounted to a blip of barely 14 months, the Gonzaleses’ brush with AIDS.

Thanksgiving weekend in 1986, after a contemplative hike through the foothills, Patrick and Hemma Gonzales thought that they had reached a decision. Their life together, just the two of them, was rich and loving, and maybe it was best they give up the idea of adopting a baby.

They got home, and the phone rang. It was Hemma’s lawyer-cousin in Mexico, the one they had once asked about finding a baby--so long ago they had all but forgotten they asked her.

She had a baby for them, a premature girl then about 7 weeks old. They had until morning to decide.

“Thinking about it, whether we should or shouldn’t, the pros and cons,� said Patrick Gonzales, a 35-year-old engineer, “we decided that this is true: that we wanted to have a baby, no matter how difficult it would be.�

It was, as it would turn out, beyond difficult. It was “devastating,� a soaring and plunging 14 months of love and grief with their adopted daughter Raechel, born too soon, and too soon dead from an AIDS-corrupted blood transfusion in Mexico that briefly saved her, then killed her.

For the Gonzaleses, there remains their baby’s photo album, half-full of pictures that show the face of an infant girl shriveling like that of a dying old woman from one Christmas to the next.

And for anyone else, there is Raechel Gonzales’ part of the AIDS quilt, her patch of pink and blue cotton 3 by 6 feet, the size of a grave. There are 3,487 other quilt-panels, each of them for someone who has died of AIDS.

Together, the Gonzaleses stitched Raechel’s name in foot-high block letters, and sewed onto the quilt a couple of her toys, a rattle and a rabbit. The making of it, said Patrick, “in a way kind of gave us a little relief.�

The quilt is touring America, and is now between New York and Detroit. People will look at the pink ruffles, and the rattle she was never really strong enough to play with, and realize that this victim of AIDS was a baby named Raechel.

“We thought that it was a start,� Patrick Gonzales said, “to get our point brought across that the virus is not only infecting older people but the children. . . . This was at least one small way to get that across.�

First there were the months when they did not know what was wrong, when the baby had constant diarrhea, was thin and jaundiced, would sometimes stop breathing--but the tests for AIDS were negative.

Then there were the months when, at last, they did know that it was AIDS--and knew as well there was nothing they could do.

In late 1986, when the Gonzaleses first saw her, she was a tiny baby, less than two pounds, and not strong enough to travel to the United States. When the doctor said she might need a transfusion to buoy her, “We said, ‘No problem, there’s plenty of relatives who will be able to come in and test.’ � But they later found Raechel had been given a donation from a commercial blood bank; none of the family donors matched.

“My main concern at that point was that she not get another disease,� recalled Hemma Gonzales, a hotel executive. “AIDS was not at the top of my list; I don’t think I was really concerned about that.�

So, briefly bolstered by the blood transfusion, Raechel came to America--and went almost immediately to a hospital. For months, the gaunt, crying infant stymied doctors. It was worms, they theorized. It was a milk reaction. It was hepatitis. It was a bone marrow problem. It might even be AIDS.

Hopes Slump, Soar

“It seemed like for a while, they were telling us that it could be (AIDS), our hopes were down, then they’d come back and say, ‘No it’s not,’ we were back up again, happy,� Patrick Gonzales said. “They just wanted to find definite proof but they were not coming up with it.�

Hospital stays began with frantic trips to the emergency room and ended with hopeful plateaus where a weight gain of a few ounces was cause for celebration.

She came home for her christening, in a dress her grandmother made. She came home for Easter, looking bloated-fat before she began losing weight again.

On Mother’s Day morning, 1987, she awoke dehydrated and vomiting, and they drove her to Childrens Hospital in Los Angeles.

The initial diagnosis was hepatitis, and the Gonzaleses were relieved at last to know what they were fighting.

“Finally, we’ve got somebody who knows what they’re doing, and is going to give us some results,� Patrick recalled thinking. “We thought even if it’s as bad as it is, we don’t care, we know what it is and we know that it can be taken care of . . . everything was falling into place.�

There was one more AIDS test the doctors recommended, a very sophisticated one, but Raechel had made it past AIDS tests before. “We thought fine, go ahead, no problem,� he said.

Bone Marrow Possibility

About the same time, doctors thought Raechel might need a bone-marrow transplant, and Hemma packed hospital blood-sample tubes and flew to Mexico, and wheedled Raechel’s natural mother and her other children into submitting, on the chance one of them could match as a donor.

A week later, Dr. Joseph Church called from Childrens Hospital. Could they please be at the hospital the next day?

“We were thinking mostly that, ‘Yeah, we found a (marrow) match,’ � said Patrick Gonzales. “But he hit us with the news that she definitely had AIDS. We were devastated.�

One wait was over; the second one, the death watch, had begun. There “was very little� to decide. “The options were really not there,� and what treatment there was, “was torture for her.� Each might give a few weeks or months of life, but exact as its price an array of pain.

“We couldn’t see giving her a drug that would only increase her life just a little but cause her so much discomfort daily,� Patrick Gonzales said.

Their doctor had advised them not to tell people about AIDS. He said it would do more harm than good and that he had seen families abandon AIDS patients before.

But, “We were very lucky. Maybe we just have very special people around us, but nobody seemed to care,� Hemma Gonzales said. “It didn’t make a difference. . . . I never saw one of them say, ‘Don’t kiss her or touch her or play with her’ or refuse to come and visit us.�

‘In Her Best Mood’

Hemma remembers that on her last monthly checkup, “she was in the best mood,� but the doctor warned them: “I want to make sure you are ready for this, that you still want to keep her at home till the last moment.�

The last moment came on Jan. 22, after a bad nosebleed. “That’s the most frustrating emotionally,� Hemma Gonzales said. “You know you can try your hardest but still it will not make a difference. If it hadn’t been a nosebleed, it would have been pneumonia or a cold or anything.�

It did not matter that she was theirs for only a calendar’s worth of months, any more than it mattered that she was adopted. “She made a drastic change in our life, black to white, and now having to do without her, it’s that all over again.

“Even though it was so stressful . . . if she was still alive we’d do the same.�