'Wrongful Birth' Suit Against USF Keys On Genetics

By THOMAS W. KRAUSE The Tampa Tribune

Published: Jul 19, 2007

TAMPA - Daniel and Amara Estrada's 5-year-old son, Aiden, will never be able to communicate.

He requires feeding tubes for nourishment and needs constant care.

Their second child, 2-year-old Caleb, has the same disorder: Smith-Lemli-Opitz syndrome.

Had they known Caleb would have the same birth defects as Aiden, the Estradas say, they would have terminated the pregnancy.

According to a lawsuit filed last year, a University of South Florida doctor, Boris Kousseff, misdiagnosed Aiden's condition. As a result, the Estradas say, they were not told about a simple test that could have caught Caleb's condition before he was born.

The rare legal action, before a jury this week, is called a "wrongful birth" lawsuit, said the Estradas' attorney, Chris Searcy.

Experts hired by Searcy have estimated that lifelong care for a person with Smith-Lemli-Opitz syndrome could cost $11 million to $25 million. By early next week, the jury will determine whether USF and Kousseff committed medical malpractice.

Even if the jury rules in favor of the Estradas, they might not see a seven-figure payout.

USF is a government entity. As such, the maximum it must pay in a negligence claim is $200,000, by Florida law. Any payment above that figure would require an act of the Legislature - which does not happen often.

"I think maybe this case is so compelling, it would be an exception," Searcy said.

Attorneys for USF said they will not comment on a lawsuit while a jury is seated. They will present their defense in court over the next few days.

Problems Evident Right Away

Immediately after Aiden's birth on June 28, 2002, severe birth defects were obvious.

The Estradas' lawsuit states that Aiden had a cleft palate, undescended testicles and a misplaced opening in his urethra.

A specialist in genetic disorders was called in from USF: Kousseff.

"This is a diagnosis that should have hit him over the head," Searcy said.

Instead, Kousseff told the Estradas that the birth defects were minor and surgery would clear up most if not all of the problems, Searcy said.

Amara Estrada, a veterinarian, got a better job in Orlando, so the family moved, Searcy said. In Orlando, they met with a doctor who gave Aiden a few tests, all of which came back negative.

The Estradas said they already had a geneticist in Tampa, Kousseff, so they declined their new doctor's offer to conduct more intensive genetic testing of Aiden, Searcy said.

The Estradas' stay in Orlando didn't last long. It became clear that Amara Estrada needed a more flexible work schedule to take care of Aiden's needs, Searcy said. The couple moved to Gainesville, where Amara Estrada is an assistant professor and Daniel Estrada is an administrator in the University of Florida pediatrics department.

When Aiden was about 15 months old, the Estradas considered having another child. Kousseff told them Aiden's condition was not genetic and the chance of a second child having birth defects was the same as any other couple's, Searcy said.

"They were, of course, pleased to hear that," Searcy said.

Amara Estrada's second pregnancy seemed to be moving forward normally. Then, Searcy said, at about 35 to 36 weeks, doctors noticed her weight gain was not as high as expected. Her amniotic fluid was low. Doctors recommended a Caesarean section.

Immediately after the birth, the defects were obvious.

Caleb, the Estradas' second son, quickly was diagnosed with Smith-Lemli-Opitz syndrome, Searcy said. A test taken anytime during the pregnancy would have diagnosed the problem, he said.

Difficult Circumstances

On the witness stand Wednesday, Daniel Estrada said caring for two special-needs children is arduous, frustrating and emotionally draining.

When Aiden gets a cold, as happens frequently, he exhibits self-abusive symptoms. He cries, bites and bangs his head, Estrada said.

When Caleb gets sick, he needs to be held almost constantly.

When sick, the children vomit often because of reflux problems. When they vomit, it is difficult to tell whether they absorbed enough medicine to help curb the cold symptoms, Estrada said.

Neither child can eat normally. Neither will be able to take care of himself.

The children's plight may outlive the Estradas. If cared for properly, they have a normal life expectancy.

As the Estradas' case moves forward, some of the more difficult issues will be kept from the jury to try to keep the proceedings fair.

Searcy said Circuit Judge William P. Levens would not allow him to ask potential jurors about their feelings on abortion. Because of that decision, the jurors have not been informed that the Estradas want to try for a third child.

Daniel Estrada said the couple have not used birth control since January. If his wife gets pregnant, they will test the fetus for Smith-Lemli-Opitz syndrome. A new child would have about a 25 percent chance of contracting the syndrome, Estrada said.

If the fetus tested positive, the couple would terminate the pregnancy, he said.

Reporter Thomas W. Krause can be reached at (813) 259-7698 or tkrause@tampatrib.com.