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Told pregnancy was 'hopeless,' family reunites with life-saving doctors in R.I.

Providence Journal 06-24-2006


PROVIDENCE -- Heidi Ramsay Caruso was nearly into the third trimester of a seemingly doomed pregnancy when her Boston doctor advised her to terminate it.

If she did not, he said, one or both of the identical twin boys she was carrying almost certainly would die. If the one did survive, there was every chance he would be severely brain-damaged.

"We can't do anything more," Caruso recalls the doctor telling her over the telephone. "Your pregnancy is hopeless."

It was Thursday, March 11, 2004. The doctor located a center where late-term abortions were performed, and Caruso booked a flight for her and her husband, Paul Caruso. They were to fly out the next morning.

Their unborn children suffered from a rare condition known as twin-to-twin transfusion syndrome, or TTTS, a disorder in which the fetal blood supply is linked in such a fashion that one fetus receives too much blood and the other, too little.

Heidi Caruso's doctor had attempted to save the twins, but the traditional treatment he favored had failed -- and he did not, Caruso says, put any stock in a newer, surgical intervention that his own Boston teaching hospital did not offer.

Lasting less than an hour in most cases, the operation involves the insertion of an instrument through the mother's abdominal wall into the womb, and the laser-destruction of some of the vessels connecting the twins.

Distraught and in pain, Caruso stayed up most of that Thursday night. She had researched TTTS before -- but until then, she had not found any mention of a program at Hasbro Children's Hospital, Women & Infants Hospital, and Brown Medical School that offers the surgery. The Providence program is still the only one in New England that does.

At about 3 a.m. that Friday, Caruso left a message with Dr. Stephen R. Carr, a maternal-fetal medicine specialist at Women & Infants.

At about 7 a.m., Carr called her back.

"Send me your records," Carr said. "If you're a candidate for surgery, we'll get you on the table today."

MORE THAN two years after hearing those words, Caruso, 30, yesterday returned to Hasbro Children's Hospital for a reunion of several families, like hers, whose children owe their lives to Carr, Hasbro Children's Hospital surgeon Francois I. Luks, and the rest of their TTTS treatment team. This month is also the six-year anniversary of the first such operation at Hasbro Children's Hospital -- an operation that was a success.

Carr, Luks and their colleagues preserved Caruso's pregnancy -- and her sons, Brendan and Brody, are now 2 years old.

Healthy and normal despite being born prematurely, they squirmed in their parents' arms as Heidi and Paul Caruso greeted Luks and Carr, whom they hadn't seen in more than a year.

"You look terrific," Carr said.

"This is Brody," Heidi said. "And this is Brendan."

"Thanks for coming down," Luks said.

Heidi and Paul, 43, a project manager for a construction firm, ordinarily dress their sons in different-colored outfits -- but yesterday, the boys wore matching T-shirts provided by the hospital. With their blond hair and hazel eyes, it was impossible for an outsider to tell them apart. The Carusos put their children down, and they raced to a table that held pizza and snacks. Later in the day, performers entertained in the Hasbro Children's Hospital lobby.

Since their pioneering operation six years ago, Luks, Carr and their team have operated on more than 30 patients, some from as far away as Georgia. Only a handful of major medical centers routinely offer the procedure, although more programs are being opened. According to Luks, patients not coming to Providence would have to travel to The Children's Hospital of Philadelphia for the operation.

THE BOSTON DOCTOR arranged for Caruso's record to be faxed to Providence on the morning of March 12, 2004. After reading it and examining Caruso, Carr and Luks agreed that the New Hampshire woman was an acceptable candidate for surgery -- and that they needed to operate immediately.

"Both fetuses were in trouble," Luks said. "If we hadn't done something, there was no way they would have survived."

The surgery was a success, and the Carusos returned home. A few weeks later, the twins were born. They each weighed less than 2 pounds, but after several weeks at Women & Infants, they were able to go home.

"A very happy ending, Heidi said. "It's really hard to believe."

Carr and Luks shared that sentiment.

"If we can help salvage a pregnancy, and the patient comes back and shows you the children, there's the intellectual satisfaction" of knowing that the surgery succeeded, Carr said. And on an emotional level, "to see healthy children is a source of incredible joy and pride."