Heroics AND Heartbreak : ‘WE ARE AN EXCEPTION’

Page Talbott Gould never knew that she and her husband, Jim, had a choice.

In 1977, when their daughter was born at 26 weeks--weighing just 1 pound, 10 ounces--they stood back in awe as doctors did everything they could to save the child. Over time, as the couple became more savvy, they realized that their daughter, Jody, was an exception: Not only did she live, but she survived with only moderate learning disabilities. (She was the subject of several media reports on her “miraculous” survival.)

“Hers is indeed one of those newsworthy stories that served to distort the reality of very low birth-weight babies. We know now her story is not typical,” says Gould, of Bala Cynwyd, Pa.

But being left out of decision-making and denied information is typical of what many parents of neonatal patients experience, often with far worse outcomes.

Gould says she feels blessed that her daughter survived, but she now questions the basis on which Jody was treated: the Goulds’ ignorance.

Says Gould: “Although on one level I am glad I didn’t know then all that could have gone wrong, still I cannot advocate withholding information from parents.

“I was not very well informed and was not asked, ‘Are you willing to do anything to save this baby?’ I’m not saying we wouldn’t have done everything. But it wasn’t put that way to us.”

Gould calls it sheer luck that Jody survived. She is now 16 and healthy except for some learning disabilities, which did not become apparent until she was mid-way through elementary school.

“She is a miracle by anyone’s terms,” Gould says. “She is incredibly successful. We are just amazingly fortunate and an exception.”

It’s not fair for doctors to make life-or-death decisions on premature babies without considering their long-term quality of life, she says.

“There seems to be, among some physicians, the philosophy of the frontier--the using of these babies as some kind of challenge of one’s skill--leaving out that it’s well and good to say the baby is alive, but it’s another thing to say, ‘It’s your turn to take care of him for the rest of your life.’

“What should be part of the experience of these doctors is spending a month living with families who have these babies as a result of (doctors’) misplaced prowess. And then see how firm their conviction is.”