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Many AIDS Children Die Without Finding A Home, Experts Say

September 4, 1987

WORCESTER, Mass. (AP) _ About a third of the children born with AIDS are abandoned or orphaned, and many die without leaving the hospital because few adults want to act as foster or adoptive parents, social workers say.

Obstacles range from fear of the disease to inability to face the thought of losing a loved child.

″These children are born in the hospital, they suffer in the hospital, and then they die,″ said Penny Ferrer, special assistant to the deputy commissioner of New York City’s Department of Human Resources.

Of children with AIDS, many are born with the disease, acquiring it from the mother, and ″about 25 to 35 percent ... will not be cared for by their biological parents,″ according to a June survey of 25 states by Phyllis Tourse, executive director of the Massachusetts Adoption Resource Exchange.

The problem of finding homes for AIDS children is expected to grow.

The Centers for Disease Control in Atlanta said there were 563 children with AIDS as of Aug. 24, compared with 280 at the end 1986. Surgeon General C. Everett Koop said earlier this year the number of cases will surpass 3,000 in the next five years.

In New York, Ms. Ferrer said she knows of about 30 children with AIDS waiting for placement - and no adoptions. Some children have been waiting almost a year for foster homes, she said.

″I know of four or five kids who have died in New York City hospitals,″ Ms. Ferrer said.

Ms. Tourse said eight families have inquired about caring for some of the 18 Massachusetts children with AIDS looking for homes.

Despite the obvious difficulties,″there are a lot of people who feel their special mission is to help and save AIDS children,″ she said.

Peggy Marengo and her friend, Alison, who agreed to be interviewed only if her last name were not used, are guardians of two 4-month-old AIDS infants. They are also seeking to adopt a 3 1/2 -year-old with the disease whom they have cared for for 1 1/2 years.

Ms. Marengo, who cares for the children at her home in Worcester, said she and Alison are kept busy with a wearying regimen of care that includes constant attention and several five-hour hospital visits a week for transfusions.

″Often children with AIDS swell up a lot,″ she said. ″They have constant diarrhea, so you’re constantly changing sheets, watering down beds.″

She said she and her friend fear the children’s death ″every time one of them gets a sniffle, because who knows what that’s going to turn into.″

″It’s very anxiety-producing, but nothing that can’t be worked with,″ Ms. Marengo said.

Rejection by friends and family hasn’t helped.

″My entire family has abandoned me more or less,″ said Ms. Marengo, 41. ″A lot of friends have also left us in the lurch″ rather than become emotionally attached to the babies, Ms. Marengo said.

Alison, 38, said her family has been more supportive, but her friends also ″have a hard time getting close, because these kids are going to die.″

Annual state support for each child ranges between $11,000 and $15,000, but the two said it does not meet expenses that include costs for hundreds of diapers a week, and special formula costing each child $25 a day.

″There’s no amount of money that you could pay to do this,″ said Ms. Marengo. ″We just have a large home, and a lot of love to give.″

Ms. Tourse said many states have been slow to help children with AIDS get placed in foster or adoptive homes. Her survey of 25 states showed only California, Connecticut, Idaho, New York and Alaska have such policies.

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