A medical miracle poses ethical dilemma

By Anna Gorman, Los Angeles Times

Dec. 15, 2011 12 AM PT

Only 24 weeks into her pregnancy, Haydee Ibarra’s doctors told her that her baby wasn’t getting the blood and oxygen she needed to survive.

If she stayed inside the womb, the baby would certainly die. If she was born, her chances weren’t much better and she could face a lifetime of health complications.

Ibarra, 22, and Yovani Guido, 24, implored the doctors to do everything possible to save their daughter. And they did.

On Aug. 30, Melinda Guido was born four months premature at Los Angeles County/USC Medical Center. She weighed just over 9 ounces —the smallest baby ever born in California and the second smallest in the United States.

“It was scary,” Ibarra told reporters Thursday outside the hospital. “Everybody was telling me the same thing: that she wasn’t going to be able to make it, that she was too tiny.”

Melinda is now four pounds, one ounce. But her future is uncertain. And the decision to employ all the technological innovations available to save her life has raised ethical questions no one can answer.

Should doctors intervene with medications, surgeries and heroic efforts to save babies who may face lifelong health problems — if they live at all? And who should make the call, given the large costs that can fall on the public?

“We are in uncharted territory,” said Dr. Rangasamy Ramanathan, chief of the neonatology section at the county hospital. “It’s very difficult to say if this baby is going to be normal.”

In the short term, Melinda risks infection and bleeding in the brain. In the long term, she could suffer cerebral palsy and cognitive and physical delays.

Melinda was just 270 grams at birth--the size of a soda can. When a baby is that small, doctors say it is anybody’s guess what will happen. There is little research about long-term survival. Doctors across the nation often let babies weighing less than 400 grams die, Ramanathan said.

“At what point do you draw the line?” said William Benitz, chief of neonatology at Packard Children’s Hospital and Stanford Medical School. “We don’t have a social or political consensus as to what we should do.”

Doctors and families make the decision together, he said, with an understanding of the serious health risks the baby could face. And some parents decide not to take extreme measures.

“There are a range of value judgments that come to bear. It’s not a right or wrong,” he said. “We do try to advise the family that even though the baby may survive, survival doesn’t mean the baby will survive intact.”

Caring for infants born so prematurely is costly. Ibarra, a cashier at a restaurant, and Guido, a cook, live in Granada Hills and said they were insured by Medi-Cal, the public insurance program for the poor.

Melinda’s care will cost the state and the county as much as half a million dollars, Ramanathan estimated. “I don’t know if I can put cost to life.… It’s worth it,” he said.

Ramanathan said he was “cautiously optimistic” about Melinda’s prospects, after medical tests showed that she was developing normally. But it is too early to tell. Doctors will monitor her condition for six years.

“The most important thing for me is not just survival,” Ramanathan said, “it’s quality of life.”

Ibarra, who has high blood pressure and a kidney disease, knew her pregnancy would be high risk. Despite close monitoring by doctors, her baby didn’t grow nearly as fast as she needed to. Ibarra went in for a checkup in late August at her local county hospital, Olive View Medical Center. Doctors discovered the imminent danger to the baby and transferred Ibarra to Los Angeles County/USC Medical Center.

Melinda was born by C-section and hooked to machines and tubes that kept her alive.

For two months, she was too sick for her parents to hold her.

When Guido finally did, he was extremely nervous. She was so delicate, he recalled, that he worried about accidentally fracturing her bones. “When you lift her up, you don’t want to lift her up in the wrong way,” he said.

Ibarra said she was just happy. “There are no words to be said — it was just love,” she said.

Guido calls Melinda his miracle baby and said he has faith in her. He sees the day when he can take her to the park. “She’s a fighter,” he said.

“No doubt about that. She’s a fighter.”

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