Keeping track of the world's tiniest babies
Worldwide 'Tiniest Babies Registry' was created at UI Health Care to give parents hope
On New Year’s Day in 1994 Ed Bell, MD, helped deliver a baby girl born at 27 weeks gestation. She weighed 359 grams, or about 12.6 ounces.
"The baby’s parents asked me if I knew of other infants born that small who had survived,” says Bell, the baby’s neonatologist at University of Iowa Health Care Stead Family Children’s Hospital. “That made me curious, so I started a search.”
With internet not yet available, Bell started poring through medical journals and news accounts, “gathering up information about these extremely rare children.”
His initial search netted a handful of results. He kept looking, and gathered enough information to launch the Tiniest Babies Registry in 2000, a listing of the world’s smallest surviving babies, all of whom were born weighing less than 400 grams, or 14.1 ounces.
There are currently 316 babies on the list, with the earliest a baby girl born in Chicago in 1936, weighing 373 grams, or 13.16 ounces. The list is interactive: readers can sort according to year of birth, birth weight, state of birth, and more.
When Evelyn Eilers was discharged from UI Health Care Stead Family Children's Hospital in April 2024 at 7 months of age, her name was added to the list. She was born at 23 weeks gestation, weighing 240 grams (about 8.46 ounces), making her the smallest surviving infant in the United States, and one of three tied for third-smallest in the world.
But the registry isn’t about seeing who is the smallest, Bell says.
“It’s not to encourage a competition to see who can save the smallest babies,” he cautions. “It’s to try to collect what’s out there so doctors and parents know there have been survivors that small and get what information we can about how they’re doing. It exists just so parents and doctors know these babies are out there and it is possible.”
“It’s so we don’t automatically say, ‘There’s no hope,’” he says.
“No hope” is not a message UI Health Care neonatologists send out. Working with parents and obstetricians at UI Health Care and other referring hospitals, the team’s philosophy is that “prematurity is not a cause of death.” It’s one of the reasons outcomes for extremely premature infants at UI Health Care are better than the national average, Bell says.
“We do very well with babies who are born very early,” he says.
The registry speaks to that, as well; of the 316 babies listed from around the world, 28 were born in Iowa and 22 of those at UI Health Care.
Bell, who has been with the hospital since 1979, says he’s glad when the tiniest patients have good outcomes, but isn’t really surprised anymore.
“It’s really pleasing when they come out that early and have very good outcomes,” he says.