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The Ethical Debate Over Micropreemies

They are the smallest survivors. The tiniest of premature babies. Their weight is measured in grams, not pounds. They are micropreemies.

In the Sunday Morning cover story, CBS Elizabeth Kaledin explains how micropreemies are fragile lives on the front lines of medicine and technology, but for parents of these babies, even with all the promise, there is endless worry.

For infants born this young, there's a chance of serious disabilities: lungs are undeveloped, brain damage is common, along with blindness and hearing impairment.

But there's no way to know whether the tiny one will encounter any problems, says Dr. Robert Kleigman who is pediatrician-in-chief at Children's Hospital of Wisconsin.

"When I'm in a delivery room and a baby at 24 weeks or 25 weeks gestation is born, to be able to predict at that moment is almost impossible," says Kleigman.

Emanuel Vila is one of these smallest survivors. Born at 23 weeks, he weighed 615 grams--barely one and a half pounds. His parents Brian Vila and Nancy Montalvo say doctors at St. Mary's Hospital in Milwaukee told them that Emanuel had a 50-50 chance of survival.

"I thought, well, he's either going to survive or he's not going to survive. And if he does survive, he'll be normal--there'll be nothing wrong with him," says father Brian.

Brian and Nancy say they were never told their son could face a lifetime of disabilities. Instead, Brian says he stumbled on the information in the hospital library.

"The only reason I knew anything about it is because a nurse was getting tired of me asking too many questions," explains Brian. "She was overworked. She said 'well you know we have a medical library upstairs, you might want to go look some things up there.'"

What Brian discovered led the couple to ask that Emanuel be removed from life support.

"We told specifically the doctor that we did not wish to continue and for Emanuel to be supported in that way," says mother Nancy.

But the doctors did not support their request.

Brian says that "they misinformed us, they didn't inform us at all. They delayed by any means they could."

Today, Emanuel is three. He's brain-damaged, can't speak, and because he can't eat or drink, he must be fed through tube running into his stomach.

The Vilas are suing the hospital and doctors, saying they weren't told enough to give informed consent about whether to keep Emanuel alive.

The couple's attorney, Timothy Aiken, says that "no one was asking that the baby be killed. What they were asking is 'let God's will be done, if that's what's to be done.' But certainly under the law, the people who have to take care of the child should be the ones making the decision whether or not extraordinary means ought to be taken. There are fates worse than death."

Linda Hansen, an attorney representing the doctors who cared for Emanuel, says "I have a hard time saying that a child who has a good chance at life. . . that it's ever in their besinterest to let them die."

Another attorney who represents the doctors, Joe Fasi, says "What Mr. Vila is now saying is that the fact that their son is alive, that that's harm. But who is it harming? It's harming Mr. Vila because it's an inconvenience and a cost."

"They're saying that Emanuel is better off dead. That he should be compensated because he didn't die. And that is essentially a wrongful life case," adds Hansen.

But Emanuel smiles. He gets joy out of snuggling with his mommy. He's getting some pleasure out of his life.

The next question may then be: would it have been better to end his life?

His father says "I don't think it's necessarily a question of what is good so much as a question of what is right. The end results don't justify the means used."

In fact, ten years ago, the means didn't even exist to keep babies like Emanuel Vila alive. That modern medicine can save them now is at the heart of a growing ethical debate: just because doctors can keep hese infants alive, should they?

For the parents of Evan Villalobos. . . the answer is a resounding yes.

Like Emmanuel, Evan was also born too soon--at 24 weeks weighing one pound seven ounces.

Father Rudy says "they told us, he's gonna be small. But when he came out his whole hand was the size of my thumbnail."

In his first days Evan, suffered a perforated bowel and brain bleeding, but despite pressure from relatives to let him go, Renee and Rudy Villalobos felt strongly that every measure should be taken to help him through.

"My only thought was 'do what you can.' You know, at least I have 50%. If there's a chance, you know, let's do what we can. You know that's my child. That's all that mattered to me is try what you can do to get him here," explains mother Renee.

The first time Renee held her baby was" wonderful. I can't even describe the feeling. It was the most wonderful of all my births. It was just the most preciousÉjust to hold him. To let him know that I was there for him. You know, 'I didn't give up on you. You're here.'"

Evan has had six eye surgeries, but aside from the fact that he's on the small side, his mother says "he's an active two-year-old, he's into everything. He walks, he's talking, he sees, he hears. He beat all the odds."

Dr. Steven Leuthner, a neonatologist at Children's Hospital of Wisconsin and Evan's doctor says "some people may call it a miracle baby which is one potential outcome when someone is this sick very early on. And for every one of Evan, there are a number of those who don't do as well as Evan."

For that reason, Dr Leuthner firmly believes parents have the right to say yes or no to their child's survival.

Dr. Leuthner says "I do feel strongly that withdrawal of support is a reasonable option for families and children if things aren't going well, and if it's a 50-50 chance. If it's you knowÉit's a coin flip, why should my values and judgements outweigh a family's values and judgeents?"

A question Emanuel Vila's parents now want answered in court.

"There is somebody to blame. There's no doubt about it. I don't have to look very far. Like I said, treatment without informed consent is unethical. I do blame them," says Brian Vila.

But lawyers for the doctors who cared for Emanuel say his parents are only thinking of themselves.

Attorney Hansen says "the decisions made for the child have to be in the child's best interest. And if the parent doesn't make a decision in the child's best interest, the parent can, essentially, be overruled by the medical staff."

Two babies. Two very different families. And one serious medical dilemma.

To Dr. Leuthner the moral of the story is that science and experience cannot be the only guides because parents' values matter and make a crucial difference.

"The difficult thing, I think, is that despite our judgements about a quality of life that a baby may have, the most important thing that I like to get from families is what their judgement about quality of life is. And how they feel about things," concludes Leuthner.

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