Baby Had Tay-Sachs : ‘Wrongful Life’ Battle Turns to Role of Doctor

Seven years ago, a Los Angeles ophthalmologist discovered cherry-red spots in the retinas of both eyes of 7-month-old Shauna Curlender of Reseda. The spots were a telltale sign of a fatal disease, Tay-Sachs.

Shauna gradually deteriorated, becoming blind, convulsive and paralyzed. She died before her 6th birthday.

The tangled legal battle over her birth, life and death changed California law to establish a new kind of legal action: a lawsuit claiming “wrongful life.” This week the controversial story is taking a new turn in Van Nuys Superior Court.

In a second case that grew from the original suit, jurors are being asked to decide whether an Encino physician can be held responsible for misinforming Shauna’s mother that she was not a carrier of Tay-Sachs, a rare neurological disorder that primarily affects Jews of Eastern European heritage.

Blood Test Issue

“Shauna never should have been born,” attorney Roland Wrinkle, who represented Shauna and her parents in the suit that led to the court’s 1980 landmark ruling, said in a recent interview. “She had no right to be brought into existence.”

In October, 1981, Bio-Science Laboratories of Encino, which analyzed a blood test taken by the mother before conception, settled the wrongful-life lawsuit filed by Philis and Hyam Curlender on behalf of themselves and their daughter for $1.6 million.

Now Bio-Science is suing Dr. Jerome Schaffer, the physician who interpreted the results of the blood test, for recovery of all or part of the $1.6-million settlement. In the current suit, Bio-Science alleges that Schaffer should share part of the blame for the mistake made with the blood test.

was 29 at the time, took the Tay-Sachs blood test on Schaffer’s recommendation. She paid $68 for the test, performed at Automated Laboratory Services in Encino.

When Philis Curlender called Schaffer a week later for the results, he told her “the tests looked good,” she recalled. She said he added, “Good luck trying to conceive.”

Five weeks later, she became pregnant and, on Nov. 2, 1977, gave birth to an apparently healthy baby girl, Shauna Temar Curlender.

But during a “Mommy and Me” class at the Mid-Valley YMCA four months later, the baby’s mother began to notice that Shauna was not progressing as well as were other infants in the class.

“I used to wonder why Shauna, who seemed very strong for her age, did not seem to have the skills the other babies had,” Philis Curlender stated in a court deposition. “She didn’t seem to respond to the world around her.”

Concerned, the parents took their daughter to pediatrician Peter Kalick, who referred them to a pediatric ophthalmologist, Dr. Arthur Rosenbaum.

Doctor ‘Very Upset’

After Rosenbaum examined Shauna and noticed the spots in her retinas, Philis Curlender recalled, “We could tell he was very upset and very shaken. He told us it could possibly be something very serious of a biochemical nature.”

But the ophthalmologist told the parents nothing more, referring them back to Kalick, according to court documents. When Kalick was asked to explain, he demurred, saying he wanted more tests to be taken.

Exasperated, Philis Curlender recalled asking, “Just tell me this: Can she die?”

“Yes,” Kalick said.

“The only thing I ever heard of that could kill a baby besides cancer was Tay-Sachs, and it can’t be Tay-Sachs because I had a test,” she remembered telling Kalick, according to the deposition.

The Curlenders subsequently had their daughter examined by a UCLA Tay-Sachs specialist, who diagnosed her on May 10, 1978, as having the disease.

Tay-Sachs typically manifests itself between the ages of 4 months and a year. The child is born with all the attributes of a normal infant, but gradually the disease attacks the nervous system. Deterioration of the baby’s mind and body is irreversible, and death usually occurs before the child’s 8th birthday.

By December, 1978, when Shauna Curlender was 13 months old, her worsening condition required that she be hospitalized.

Philis Curlender quit her teaching job at Mirman School, a private school in Bel Air, and instead began working as a part-time secretary so that she could spend more time with Shauna at Fairview State Hospital in Costa Mesa.

But like all children born with Tay-Sachs, there was no chance that Shauna would ever leave the hospital. There was nothing to do but wait. She died Oct. 23, 1983.

known that Tay-Sachs occurred mostly among Jews of Eastern European ancestry. Philis Curlender is an Ashkenazi Jew--that is, of Eastern European descent. Hyam Curlender, who was born in India, is one-quarter Ashkenazi and three-quarters Sephardic Jew--descended from Asian, Spanish or Portuguese Jews.

For offspring to contract Tay-Sachs, each parent must be a carrier of the rare recessive gene. Even if both parents are carriers, there is only a one-in-four chance of having a child with Tay-Sachs.

Because of Hyam Curlender’s background, the odds that he and his wife would have a Tay-Sachs’ child were dramatically reduced. Even so, Philis Curlender took the blood test as a precaution.

Suit Filed in 1978

The parents, acting on behalf of their daughter, filed suit in August, 1978, against Bio-Science; Automated Laboratory Services, the firm that drew the blood, and Schaffer, the physician who interpreted the results. After Bio-Science paid the Curlenders the $1.6 million, Automated settled with Bio-Science, paying the firm $35,000 in late 1984.

The Curlenders’ wrongful life suit called for compensation for Shauna’s shortened life span, based on 72.6 years’ life expectancy that was denied her. It argued that, if her parents had known of the genetic problem, they never would have conceived Shauna.

The right to bring a wrongful-life malpractice suit on behalf of Shauna was upheld in a precedent-setting decision by the state Court of Appeal in June, 1980.

In subsequent court records, Bio-Science admitted that it was 50% at fault and said that its internal controls were inadequate at the time.

Bio-Science’s suit against Schaffer contends that Schaffer failed to interpret Philis Curlender’s blood test as being “either a borderline result or (that she was) a clear Tay-Sach’s carrier.” The firm alleges that Schaffer, a general practitioner, “knew absolutely nothing about Tay-Sachs disease carrier testing and was way above his head in handling this medical problem.” He either should have had the expertise of a geneticist or should have referred the Curlenders to a specialist, the suit contends.

Two Phases of Suit

Superior Court Judge Joel Rudof, who is hearing the case that opened March 22, ruled that the suit should be split into two phases.

First, jurors are to decide whether Schaffer was at all negligent. If they decide the physician was at fault, jurors must then decide what percentage of blame Schaffer should assume.

Second, jurors are to decide whether the $1.6-million settlement made to Shauna Curlender and her parents was reasonable.

In what was perceived as damaging to Schaffer, two experts on Tay-Sachs testified last week that they would have interpreted the Curlender test results as coming from a carrier of Tay-Sachs. Bio-Science has insisted that Schaffer should have known that Curlender was within the range of a possible carrier.

Deposition of Doctor

In a deposition taken before trial, Schaffer indicated that before the Curlender situation he had never had a patient tested for Tay-Sachs disease, nor had he ever seen written results of a Tay-Sachs blood exam. He said that, even though half of his patients were Jewish, he never had any discussions with his patients about Tay-Sachs.

During the trial last week, Schaffer testified that he did not ask either of the Curlenders whether they were descended from Eastern European Jews. He also said he did not recommend that the couple seek advice from a specialist.

Schaffer refused to discuss the case. But his attorney, Robert Baker, maintained that his client accurately interpreted the results supplied by Bio-Science.

“There was nothing wrong with what Dr. Schaffer did,” Baker said in an interview. He said Bio-Science “trapped” Schaffer by offering a test to determine Tay-Sachs and by providing a form with which to interpret the results.

“There is an acceptable range of values that either indicates the person is a Tay-Sachs’ carrier or is not,” Baker said. “According to the written form that had the Curlender results on it, there wasn’t an indication for Tay-Sachs.”

expected to end Wednesday or Thursday, attorneys said.

The Curlenders would not comment on the lawsuit.

In a deposition, Philis Curlender said Shauna’s condition took its toll on the couple’s marriage. They were separated in 1980 and now are divorced. Hyam Curlender, who now is 37 and works as a travel agent, lives in Tarzana. Philis Curlender, now 36, has moved to London.