In an infant intensive-care room at Presbyterian/St. Luke’s Medical Center, Dr. Jeffrey Hanson sat on a stool, trying to guide a very big needle into the spine of a very small baby.
A month ago, this girl, born at 1 pound and change, looked like one of the unit’s success stories. Now she was in trouble, and Hanson wanted to know if the source of that trouble was meningitis.
Next door, in another private room, little Michael Sierra lay snoozing.
A week earlier, Michael had three emergency surgeries, and no one predicted that within days he would have graduated from a breathing machine, started to eat – or begun charming his nurses.
He did all three.
A neonatal intensive-care unit is a world of surprises, predictions turned upside down, and hopes constantly roller-coastering.
“You and I could not survive what these kids go through,” Hanson said. “They are the most resilient creatures in the world.”
The number of premature and very premature babies who survive continues to rise. Doctors can now head off some of prematurity’s side effects, and they can look to indicators – bleeding in the brain, weight and gestational age at birth – that offer hints at a long-term prognosis.
“Follow-up care is very important,” said Dr. Delphine Eichorst, who cares for babies in Presbyterian/St. Luke’s neonatal intensive-care unit.
Presbyterian/St. Luke’s follows its preemies for two years after they leave the hospital, Eichorst said.
One reason is that right up to the moment parents finally take their baby home, doctors often cannot say what a very premature baby’s future will look like.
Just ask Brian and Sarah O’Neil.
When their twin girls were born 11 weeks early in 2003, it was Caitlin everyone worried about. While her sister scarfed food and moved oxygen through her body like a pro, Caitlin sputtered and stalled in Swedish Medical Center’s NICU.
“They were really worried about her,” Sarah O’Neil said. “I wasn’t even allowed to hold her for three days.”
One morning, weeks after they were born, O’Neil walked in for her daily visit and found a doctor waiting for her.
The girls’ brain scans had come back. Caitlin’s was clean, but there had been bleeding in Abby’s brain.
Four years later, both girls are happy, engaging preschoolers with a shared talent for Play-Doh sculpting.
Abby, though, walks only when cajoled into grasping the pint-sized walker parked in the family room of her Highlands Ranch home. She has had three surgeries so far and wears braces on her legs to combat the spasticity caused by cerebral palsy.
Abby’s doctors suspect the bleeding happened before birth and may have contributed to the twins’ prematurity, Sarah O’Neil said.
Link to cerebral palsy
United Cerebral Palsy estimates that every year, about 8,000 babies and up to 1,500 preschoolers are diagnosed with cerebral palsy. Prematurity is a major cause of the condition.
A Canadian study published in June in the Journal of the American Medical Association found that after peaking in the 1990s, the rate of cerebral palsy among premature babies has dropped, thanks to better care.
The American Academy of Ophthalmology estimates that every year 80,000 babies are at risk for losing part of their vision to a condition called retinopathy of prematurity, and 600 children a year are blinded from it.
A nationwide group of medical centers, called the Vermont Oxford Network, followed 1,775 children who had been born from 1998 to 2000 weighing less than 2.2 pounds. Of those, 42 percent had to be hospitalized again; 31 percent had severe disabilities, including blindness, vision or hearing loss and cerebral palsy.
When Michael Sierra goes home to the Rosebud Lakota reservation in South Dakota, “he’s going to need care for several years,” Hanson said.
Infection destroyed half of Michael’s intestine and colon. That means he won’t absorb nutrients easily and will need a special diet for some time, Hanson said. Michael’s mother, Tweedy Sierra, said there is an Indian Health Service clinic near the family’s home, but the closest major hospital is in Rapid City, 185 miles away.
Ongoing financial drain
Prematurity can exact a heavy toll financially, as well.
In her four years, Abby O’Neil has been hospitalized half a dozen times. A year ago, the family got onto a Medicaid program for disabled children that pays for much of her physical therapy. Sarah O’Neil estimates that has saved her family $300 a month.
Colorado spends, on average, $21,000 per child for the 1,300 enrolled in a Medicaid program for developmentally delayed and disabled kids. State Medicaid spokeswoman Joanne Lindsay said there is no breakdown of disabilities among those children.
In a report on prematurity issued last year, the Institute of Medicine estimated that the nation’s tab for special education for children born early topped $1 billion in 2005.
Goal: Stop prematurity
Ultimately the goal is to figure out how to stop babies from being born so early, said Dr. Ronald Gibbs, chairman of the University of Colorado Health Sciences Center’s obstetrics and gynecology department and an advocate for the March of Dimes.
“If you think of the loss of lives and then, from the complications of prematurity, you have lost so much productivity and potential,” he said.
In the meantime, families – and doctors – often find themselves learning day by day how to care for premature babies and the children they grow into.
“Our doctor told us that preemies are a new species,” Brian O’Neil said. “They weren’t even around 30 years ago.”
Staff writer Karen Augé can be reached at 303-954-1733 or kauge@denverpost.com.
