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Counseling parents of the earliest-born preemies: A mom and two physicians talk about the challenges

preemie toesWhen Juniper French was born in April 2011, her mom had been pregnant for 23 weeks and 6 days - a little more than half of a typical 40-week pregnancy. Shortly before her birth, doctors had to try to explain the possible consequences of her very early arrival to her parents.

"Prematurity is a very unusual condition because it can affect any corner of the body or the mind to any degree," Kelley Benham French, Juniper's mother, told a group of journalists at the Association of Health Care Journalism 2015 conference this past weekend. French and her husband were informed that, even with intense medical intervention at birth, their daughter had an 80 percent chance of death or morbidity. Not only was that staggering, but their doctors couldn't be very specific about what this number might mean if Juniper did survive: "We asked, 'Do you mean life on a ventilator or asthma? Do you mean blindness or a wheelchair?'" French recalled. "They said, 'We don't know.'"

These same uncertainties are faced by all parents of babies born near the edge of viability, between 22 and 25 weeks of gestation. French, a reporter, eventually wrote an award-winning series about Juniper for the Tampa Bay Times that explains the swirl of emotions and statistics she and her husband, Tom, had to navigate in deciding to ask their doctors to resuscitate Juniper at birth. As French told the conference attendees, the choice was excruciating; they desperately wanted to be parents but didn't want their baby to suffer. They wondered if "it might be less selfish to just let her die."

Two Stanford experts joined French in Friday's presentation to discuss difficult conversations about very early preemies.

Neonatologist Henry Lee, MD, gave a sampling of the information he must present to parents when he has these conversations as part of his work at Lucile Packard Children's Hospital Stanford: Not only are these babies at risk of dying, they face daunting early-life medical complications. Lee rattled off a list: retinopathy of prematurity; necrotizing enterocolitis; bronchopulmonary dysplasia; intraventricular hemorrhage. Referring to the last item on this list, he said "You can imagine, talking to a parent, telling them that 'Your baby is at risk for having bleeding into their brain' can cause a lot of anxiety. And often this is the patient's first time meeting this doctor or nurse. They don't have any relationship, but they're talking about these weighty matters."

Stanford obstetrician Amen Ness, MD, added that women in preterm labor are often asked to make critical medical decisions quickly. Do they want steroids to mature the baby's lungs? Are they OK with receiving a classical c-section to deliver the baby, which produces a large vertical scar that increases the risk of placenta accreta in future pregnancies? How much fetal monitoring do they want?

Most of these decisions would feel more comfortable if the patient had a few days to think things over and could return for later conversations with more questions. "You really need that time but you don’t always have it," Ness said.

To try to make the process less overwhelming, the Stanford team has worked to synchronize the messages families receive from different caregivers, so parents aren't confused by conflicting information. And, Ness added, he and his colleagues try to ease the urgency of the situation by emphasizing that parents can take their experience a day at a time. "You're committing to the first section of the process," he said he tells parents. "We can do everything for today, and then let's see where we are tomorrow."

Ultimately, that was the sort of approach the French family took. And although Juniper nearly died several times during her 196-day NICU stay, today she is healthy. She's tiny - Kelley got a laugh at the conference by saying "I can't find underwear to fit her; nobody who's potty-trained has a butt as small as her" - but the complications she experienced in the NICU have resolved. Her development is right on track. She does regular 4-year-old stuff like attending preschool.

At the very end of the session, as Ness was explaining his final slides, the back door of the conference hall cracked open. Someone hollered "Mommy!" and came racing up the aisle. It was Juniper. She climbed up on stage and entertained herself with her mother's phone while the grown-ups finished what they were doing. Just like any other 4-year-old.

Previously: Stanford-led study suggests changes to brain-scanning guidelines for preemies, The year in the life of a preemie -- and his parents and Talk to her (or him): Study shows adult talk to preemies aids development
Photo by Jill Watson

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