"I am sympathetic with this family because I agree with them that these kinds of very difficult decisions need to be [made with the parents]," he said. "Every one of these decisions is shrouded by the biologic uncertainty of both the dates…and how mature the baby's lungs are going to be."
And Lantos asserted that most parents would feel the same way Capewell did.
"If you ask parents, 'do you want your baby to be resuscitated regardless of birth weight or gestational age?' Ninety percent of parents say, yes," said Lantos, citing a 2001 study in the medical journal Pediatrics that looked at the issue.
Guidelines for extremely premature babies do not exist in the U.S. presently as they do in the U.K. "Guidelines are general guidelines, and we don't have laws about it," said Holzman. "In the United States now, generally, in most centers, under 23 weeks most neonatologists…do not aggressively attempt to resuscitate and save babies that small."
Between 23 and 25 weeks, those decisions are typically made with the doctors and the parents.
"There's not a rule, but local practice," he said.
But very premature babies face a number of obstacles beyond mere survival.
"The concern in the smallest of babies is that the risk for multiple developmental disabilities and handicaps becomes so high that it might come within the parents' prerogative not to be aggressive," said Holzman. "The totality of the disabilities becomes somewhat concerning between cerebral palsy, mental retardation, deafness, blindness, that we're not all of one mind yet as to what the right thing to do is."
He also noted that another reason for the importance of a parent's involvement is that different parents will have different attitudes toward raising a child with special needs.
"Many appropriately say, 'I'm happy with whatever child I'm given, no matter how they are,'" he said. "I counsel people trying to have them understand the wide range of possibilities. There are families who end up feeling their lives are enriched by having a special needs child, and there are other families who can't imagine their life like that. And I try to figure out who they are."
For now, it seems that 22 weeks is around the earliest date at which a baby will survive, although Caplan noted that "if you can find some way to allow the lungs to develop prior to their being there, then you're going to push that frontier back."
But when it comes to national guidelines and rationing of care for newborns around that age, doctors say they are unlikely in the U.S. (Babies after 26 weeks almost always need to be resuscitated, as per a set of federal laws known as the Baby Doe laws.)
For one thing, rationing would have little economic effect.
In 2005, according to the Institute of Medicine, the total of health care costs for all preterm babies born in the United States was $26 billion.
"In the overall scheme of things, the entire expenditures on neonatal intensive care are rounding errors on national expenditures," said Lantos. "It wouldn't be a good place to start if we're looking at cost containment."
And this figure represents a total -- not just those babies who were born at the edge of viability.