Tiniest Babies registry shows improved survival rate

Survival of infants born weighing less than 400 grams, which is just shy of a pound, is rare - but increasing.

This is according to an article published Dec. 27, 2010, in the journal Pediatrics by Dr. Edward Bell, a UI neonatologist who founded the Tiniest Babies Registry in 2000. The registry now lists 111 tiny babies born around the world since 1936 who survived until hospital discharge.

Go here to read the registry.

"Every parent I have heard from - and I have heard from the parents of more than half of the babies in the registry - tells me that they found the registry very helpful," Bell wrote to The Gazette in an e-mail. "It gave them hope and also told them of some potential health and learning issues their child might face."

John and Diane Merchant, of Iowa City, were one of these families.

Their daughter Emma was just 13 ounces when she was born Sept. 14, 2005. Diane was 27 weeks into her pregnancy when her doctors at UI Hospitals decided they needed to get Emma out because Diane's genetic clotting disorder was preventing the baby from getting enough nutrients.

"I said, ‘If I can hear her cry I will know everything is all right with her'," Diane Merchant said. "I heard this little squeak."

Emma is lucky. The blue-eyed blonde has no disabilities and her eyesight is strong. She's petite and hangs on to colds longer than her peers, but she's completely normal, Diane Merchant said.

Emma is No. 74 on the Tiniest Babies Registry, one of 11 born in Iowa and six born at the UI. The registry includes links to the Merchants' blog, which shows pictures of a healthy Emma picking apples and dressing as a ghost for Halloween.

"I want people to see that there's hope," Diane Merchant said. "If they (parents) are freaking out, they can look at our blog. Emma wasn't supposed to survive, but because we have such an excellent hospital she did."

Bell and colleague Diane Zumbach gathered information about tiny babies from medical journals, the Internet and even the Guinness Book of World Records. They confirmed parent-reported births with treating physicians.

Infants in the registry weighed between 260 grams and 397 grams at birth and had gestational ages from 22 weeks to 34 weeks. Three-quarters of the babies were female and nine of the 10 smallest were girls.

"It has been recognized for many years that premature baby girls are more likely to survive that boys who are equally premature," Bell told The Gazette. The difference may be due to hormones that help girls' lungs develop more quickly.

Gestational age is more important than weight in a baby's survival, Bell said. "A 400-gram 25-week baby has a much better chance of survival than a 600-gram 22-week baby," he said.

Survival of these micropreemies is still rare. Of the millions of babies worldwide who leave hospitals each year with their parents, only 111 have been found who were less than 400 grams.

The registry shows babies with a variety of health problems including glaucoma, cerebral palsy, chronic lung disease and developmental disorders. One baby born at UI hospitals in 2002 died 10 months later of liver cancer. Most of the children remain short and underweight.

However, micropreemie survival stories have increased each year since the early 1990s, the UI researchers report.

The registry may not include every baby less than 400 grams and some data from the 1930s is sketchy, the researchers said. One of the early entrants was reportedly weighed on a grocery scale.

The largest number of babies from a single hospital was eight, submitted by Dr. Frank Pohlandt, a neonatologist in Ulm, Germany. "The relatively large numbers from a few centers is partly by chance but also reflects high levels of skill and commitment in treating these tiny babies," Bell said.