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.
Highlights from the study will be
presented on May 2 at the annual meeting of the Pediatric Academic
A range of options exists for managing
infants born before 25 weeks of gestation — from resuscitation to palliative
care. But many such babies face grim prognoses, and parents and doctors must often
make decisions within minutes of delivery.
To test the value of photographs in
helping explain the full spectrum of possible lifelong neurological and
developmental outcomes facing very premature babies — ranging from normal
development to severe disability—the Hopkins researchers recruited 90 women who
had just given birth to full-term babies.
The women were given a hypothetical
scenario and asked to make a resuscitation decision following a standard
prenatal counseling for extremely premature delivery. Then they were asked to
make that decision again, but this time after also viewing photos of
school-aged children with a wide range of outcomes, from normal development to
severe neurological and developmental disabilities associated with severe
After seeing the photographs, many
mothers said they felt greater certainty about their decision and reported a
better grasp of the risks and benefits of each alternative. Nearly 77 percent
said they preferred the counseling augmented by the photographs.
Specifically, after the picture-free
counseling, 40 percent of the women were still struggling and could not make a
decision, but after seeing the pictures, one-third of the undecided women said
they felt comfortable making a choice.
“It can be hard for someone to
imagine their newborn 10, 20, 30 years down the road,” says lead investigator
Colleen Hughes-Driscoll, M.D., a neonatologist at Hopkins Children’s. “But with
these powerful images, the data suggest we can help mothers during this
critical time by making the often-confusing ‘doctor speak’ more concrete and by
putting vague medical terms into real context.”
The photographs can also narrow the
gap between what is being said and what is being heard, the investigators say,
so much so that these pictures can be an invaluable tool for doctors and
“The bottom line is that
neonatologists need to talk about long-term outcomes during prenatal counseling
of women with high-risk pregnancies,” says study senior investigator Pamela
Donohue, Sc.D., of Hopkins Children’s. “One of the reasons why they don’t is that
they don’t have the right words, and this is where pictures can help.”
Researchers measured a woman’s degree
of uncertainty or conflict about her choice using a standard 1 to 5 scale. The
average conflict score dropped from 1.88 to 1.74 after the women saw the
The researchers plan to next study the
approach in a group of mothers getting ready to give birth to a very premature
Up to 1.7 percent of the 4.2 million
births in the United States each year involve severely premature babies weighing
less than 1,500 grams.
Co-authors on the study included
Renee Boss, M.D., Jessica Bienstock, M.D., M.P.H., and Jennifer Shepard.