Several years ago, Libby and Albert Zucker of Monsey, New York, adopted a Jewish child with Down Syndrome. The Zuckers already had five children of their own, but took in the baby when no other Jewish family came forward to adopt her.
Unfortunately, in the Jewish community, the Zuckers are almost alone in their desire to adopt or raise a Down Syndrome baby. More than 80 percent of the 100 or so Jewish babies born with Down Syndrome in the U.S. each year are given up for adoption, but there are no Jewish adoptive homes for them. They end up being placed in non-Jewish homes or languishing in foster care for many years, according to Janet Marchese, president of the Down Syndrome Adoption Exchange in White Plains, New York.
Jewish families are much more likely than others to surrender their Down Syndrome newborns. This is in contrast to the statistics in the general U.S. population, where about five percent of the 5,000 Down Syndrome babies born each year are given up for adoption, says Marchese. There is even a waiting list of non-Jewish families wishing to adopt a Down Syndrome child.
Down Syndrome, which used to be called Mongolism because of certain facial characteristics, causes mild to moderate retardation, as well as certain, often-correctable physical defects. It occurs at the same rate in both Jewish and non-Jewish populations.
Marchese, who is Catholic, has been advising families of Down Syndrome children since she herself adopted a child with Down Syndrome fourteen years ago. During that time, she has placed 1,650 babies who have been surrendered by their birth parents for adoption. Eighty-five percent of them have been Jewish. Only eight of those have been placed in Jewish homes because there were none available, according to Marchese.
“Ninety-nine percent of the Jewish children are going to non-Jewish homes, because we cannot seem to find enough Jewish families’,’ Marchese says.
“We need to take an ad out in The New York Times and write in very large print: Jewish children are institutionalized by Jewish people because they are imperfect;’ urges Libby Zucker. “Then every rabbi in the world would stand up and holler because of chilul hashem (embarrassment to God)”
Marchese is not in the business of placing Jewish children; it’s just worked out that way because those are the babies being given up for adoption. “The families are middle-to upper-class with goals for their children — monetary gains and educational gains. They have a difficult time accepting anything less than perfect;’ she claims. Many won’t even take their baby home from the hospital. For those same reasons, Jewish families are less likely to adopt a baby with Down Syndrome.
The problem is especially acute in the Orthodox community, where parents surrendering a child might be reluctant to have her placed in a non-Jewish home. “When Orthodox Jews put on the stipulation that their child must go to a Jewish family, that child will wait;’ Marchese explains. “There are many Jewish child/en who are stuck for years [in foster eare] because of that obligation.”
Dr. Joel Rosenstein, director of the Jewish Board of Family and Children’s Services division of developmental disabilities, agrees. “She’s correct — there’s more of a problem in the Jewish community and even more in the Orthodox Jewish community.
“There are people who are afraid of rejection;’ said Rosenstein, who also directs Mishkan, a Brooklyn-based intermediate care facility for the developmentally disabled, which serves a large proportion of Orthodox clients. “They are afraid of shiddach (matchmaking) rejection” for all of their other children because one sibling has Down Syndrome.
Stereotypes abound, according to Marchese, whose adopted son Todd Jonathan “skis, swims, is on a school diving team and handles a small paper route by himself. He is mainstreamed in a lot of regular classes. His life has become very normal.
“His parents were told that he would never pick his head up or look at them” she adds. Such misinformation discourages parents from keeping their children, and Marchese is trying to counter that nowadays.
To that end, Marchese consults with hundreds of families referred to her by hospitals and genetic counselors. She talks to families who have given birth to Down Syndrome babies, as well as to families who have received a diagnosis of Down Syndrome following amniocentesis.
One such family is the Friedls of Long Beach, NY, who gave birth to their first child, a girl, last winter. “We didn’t even know for a couple of days afterward that anything was wrong;’ Ellen Friedl recounts. But then doctors told them that their daughter, Katie Brook, was suffering from Down Syndrome. Among the topics discussed was the possibility of giving her up for adoption.
“We wanted to keep her” explains Ellen, “but we also wanted to be convinced.”
Janet told us the pros and cons, and urged us not to put her up for adoption;’ says Ron Friedl. “She gave us names of other families with Down Syndrome children, and we spoke to them.”
Janet didn’t sway it either way, but the things she said helped us more than anything. We told the doctors: ‘Wrap her up. We’re going home,'” says Ellen. Their daughter now attends a special school for children with Down Syndrome, and is doing “exceptionally well;’ according to her father.
From time to time Marchese speaks to Jewish groups, at synagogues and conferences. Last year, she spoke at the annual Conference on Alternatives in Jewish Education.
“She wowed everybody’,’ says Danny Siegel, chairman of the Ziv Tzedaka Fund, Inc., a Maryland-based, Jewish non-profit philanthropic organization that helped fund Marchese’s trip to Seattle, where the conference was held.
Siegel is helping Marchese reach more Jews. So far, Marchese has spoken in several religious schools, as well as at the annual dinner for the Jewish Association for Retarded Citizens.
“If we could change one mind … ” she implores. Unfortunately, she claims, none of her appearances have resulted in Jewish families coming forward to adopt a Down Syndrome child.
For further information regarding Janet Marchese’s organization or to make tax-deductible donations, contact the Down Syndrome Adoption Exchange, 56 Midchester Ave., White Plains, NY 10606, (914)428-1236.