Blog, Downs Syndrome, Inclusivity

Haaretz: ‘This Couple Wants Israelis to Stop Abandoning Down Syndrome Babies at the Hospital’

This Couple Wants Israelis to Stop Abandoning Down Syndrome Babies at the Hospital

Infants with special needs are sometimes left behind – including by ultra-Orthodox Jews hoping to hush up genetic disorders in a community where marriages are often arranged.

When Rifky and Yossi Bar set out to adopt a child, they had one key criterion: They would only take a baby that nobody else in the world wanted.

So three years ago, when they were notified that a baby girl with Down syndrome had been abandoned in a Jerusalem hospital and was about to undergo major heart surgery, they sprang into action.

They drove to the hospital in the middle of the night and after Rifky pretended to be the baby’s mother, she got permission to enter the nursery. Although the baby was hooked up to machines and monitors, Rifky gently lifted her out of the incubator and held her tightly. She promised her soon-to-be adopted daughter Tamar that she would never leave her.

The doctors warned Rifky and Yossi, who are ultra-Orthodox Jews, that Tamar would probably never walk or talk. “They said she would be a vegetable for the rest of her life,” Yossi recounts.

But Tamar proved the doomsayers wrong. Not only did she fully recover from her heart surgery, but today, three years later, she can walk and communicate with her parents, who consider her their greatest blessing. They now want to adopt other babies with Down syndrome.

Rifky and Yossi, who were told by their doctors that they would never be able to have biological children of their own, went public with their story on Israel’s Channel 1 last week. The item, which went viral with more than 1 million hits on Facebook, has raised awareness about a problem largely kept under wraps in the country – special needs babies who are abandoned in hospitals.

More often than not, these are babies with Down syndrome, because the chromosome abnormality is relatively easy to detect soon after birth. While there is no precise breakdown, a good percentage of these infants are born to ultra-Orthodox women, who typically avoid prenatal screenings and refuse to undergo abortions, hospital sources say.

In the ultra-Orthodox community, where marriages are commonly arranged, it is often feared that the existence of disease and genetic disorders in a family will deter potential suitors. As a result, there is a greater tendency to hush such things up.

According to the Health Ministry, the annual number of babies born with Down syndrome in Israel has hovered around 130 in recent years, with only about two or three abandoned each year.

Open gallery view

Ultra-Orthodox Jewish children outside the Education Ministry in Jerusalem.Credit: Olivier Fitoussi

Tismotek, a nonprofit dedicated to fighting stigmas attached to Down syndrome, has very different statistics. It estimates that about one-third of babies born with the abnormality are left in hospitals each year.

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“But over the past three years, since we launched our campaign to create awareness of this problem, the numbers have declined dramatically,” says Vardit Azizi, a founding member of the organization. She notes that it’s difficult to obtain precise data on the phenomenon because often babies that are moved to foster homes don’t show up in the statistics as abandoned.

Subtle advice

The daily Yedioth Ahronoth published an article this week alleging that Israeli hospitals encourage women with Down syndrome newborns to leave them behind to be transferred to foster families. The investigation was based on testimony provided by more than 20 mothers, some of whom reported being chastised by hospital staff for not undergoing prenatal screening.

According to these testimonies, hospital doctors and social workers were often subtle in presenting advice, simply ensuring that the mothers knew they had the option of not taking their baby home. But the message was clear, these mothers said. Yedioth found that hospitals often scare parents by painting a dire picture of the health and development prospects of babies with Down syndrome. Two hospitals named in the piece declined to comment, while the others denied the allegations.

Speaking with Haaretz, Health Ministry spokesman Eyal Basson categorically denied that there is any policy that encourages parents to abandon babies with Down syndrome in the hospital. “Quite the reverse,” he says. “After children with specials needs or disabilities are born, social workers and doctors make parents aware of the ramifications of the situation, and they are sensitive and professional when they do.”

Basson adds that social workers act under the assumption that it’s best for babies to be with their families. “At the same time, if there are specific complaints, we would be happy to get details so that we can investigate them,” Basson says.

Azizi says that when her organization was first established three years ago, she and the other two founders – all mothers of children with Down syndrome – were trying to figure out why parents would choose to leave their babies in the hospital.

“What we discovered is that often, the hospital staff paint such a bleak picture of what to expect with a Down syndrome child that people simply get scared,” she says. “They’re told that the babies won’t live long, that they’ll be sick for the rest of their lives and that it will take a toll on the entire family. But these things simply aren’t true – you only have to meet people raising children with Down syndrome to know that.”

Particularly devastating to Azizi was the way the hospital staff notified her that her baby had Down syndrome. “They started off by saying, ‘We are sorry to inform you,’” she says. “What’s there to be sorry about? Why do they think there’s anything tragic about this?”

Her daughter Hila, now 6, is starting first grade this week. “I was warned she would have very limited mental capacities, but she hasn’t even started school, and she already knows how to read,” Azizi boasts.

Shattering stigmas

A recent CBS News report found that Down syndrome had virtually been eradicated in Iceland. Between 80 and 85 percent of pregnant women in the country undergo prenatal screenings for the chromosome abnormality, and among those who receive positive results, virtually 100 percent terminate their pregnancies. Last year, according to this report, only two babies in Iceland were born with Down syndrome.

The rate was almost as high in Denmark, but in the United States, only 67 percent of mothers who tested positive chose to end their pregnancies. Israel’s Health Ministry does not collect statistics on prenatal screenings for Down syndrome and abortion rates for women who test positive. Medical experts in the country estimate, however, that about 75 percent of Israeli women undergo prenatal testing.

Since they adopted Tamar three years ago, Yossi and Rifky Bar have been on a crusade to shatter the stigmas attached to Down syndrome so that parents will stop abandoning their babies. Since their story was aired, Yossi has been inundated with calls from other couples eager to follow his cue and adopt children with Down syndrome.

“I even got a call from a couple who left a baby with Down syndrome behind in the hospital two years ago and now want me to help them get the baby back,” he says.

Most couples who abandon their baby act on the advice of others, he believes. “In 90 percent of the cases, it’s someone else – it could be parents, the hospital staff or even a rabbi – who is telling them what to do, and often this advice is based on complete ignorance,” he says.

Estelle Rubinstein, head of the department of social work at the two Hadassah hospitals in Jerusalem, says that based on her 30 years of experience, medical staff don’t try to influence family decisions one way or the other.

“For those who haven’t yet decided, we help the families go through the process to facilitate that decision,” she says. “As social workers, we are committed to the well-being of the children and their families, and we don’t make judgment calls.”

When asked how a social worker should address a woman who has just given birth to a child with Down syndrome, she said: “The first thing you should say is ‘mazal tov.’ But one cannot ignore the fact that this very often was not the hope of the person who had the baby.”


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