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In extremely early births, making life-or-death decisions

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Melinda Guido
This undated photo provided by Melinda Guido's family shows Melinda in the neonatal intensive care unit at the Los Angeles County-USC Medical Center. Melinda was born premature at 24 weeks weighing 9.5 ounces.
AP Photo/Haydee Ibarra

About 30,000 American babies are born so prematurely each year that they will face serious, lifelong problems, according to an op-ed in The New York Times.

Advances in neonatal medicine have allowed preemies as young as 23 weeks' gestation to survive. But these cases raise thorny questions about how doctors and families make the difficult decisions concerning the lives of these children.

So how do doctors help parents decide whether to treat an extremely premature baby with a bleak prognosis? 

"Our culture is slowly growing more comfortable talking about end-of-life issues as they relate to the elderly: whether to allow a natural death or prolong life even if it means suffering," April R. Dworetz, a neonatologist at Emory University, writes in the Times op-ed.  

But parents of preemies "are still completely unprepared. It's time we broaden the discussion to include them." 

Many parents do not fully grasp the severity of the situation involving their critically ill newborns, according to research at Johns Hopkins Children's Center.

"It really boils down to: Make two-way communication with parents a top priority. Period," says Dr. Renee Boss, a neonatologist at Johns Hopkins Children's.

Dworetz also recommends that pregnant women and their partners discuss their values about life, death and disability with their ob/gyns or others.

LEARN MORE ABOUT MAKING DIFFICULT MEDICAL DECISIONS:  • Study: Communication with Moms of Critically Ill Infants Needs Improvement
"One thing that we, clinicians, must always keep in mind is that talk doesn't equal communication, and just because we spoke with a parent we cannot assume that our message got across," says senior investigator Renee Boss, M.D., M.H.S., a neonatologist at Hopkins Children's Center. (hopkinschildrens.org)

• Photos May Help Mothers with End-Of-Life Decisions for High-Risk Premature Babies
"For a woman trying to make the agonizing choice between resuscitating her critically ill premature baby or letting go, a picture may be worth a thousand words, according to a small pilot study among women with full-term newborns conducted by researchers at Johns Hopkins Children's Center." (hopkinschildrens.org)

• A Busy ER Doctor Slows Down To Help Patients Cope With Adversity
Dr. Linda Smith, a palliative care doctor, recalled: "I can remember saying to families things like, 'I'm sorry, there's nothing more I can do.' And I realize now that sounds like abandonment to many people when you say you can't do anything more. And the reality is I may not be able to do anything more to the patient that will make them survive, but there's a lot more that I can do. I always can do more." (MPR News)

• As Newborn Heart Surgery Improves, Survivors Thrive
Jeni Busta is one of the earliest long-term survivors of a risky operation first performed 29 years ago that rebuilds the tiny walnut-sized heart of a newborn. She doesn't remember any specific time when her mother told her she had half a heart. "It's all I knew," Jeni says. "I don't know what it's like to have a normal heart." (MPR News)