Emily Edwards was just past her due date when she delivered a healthy 9-pound, 12-ounce baby by cesarean section. Mom and baby had done well until four days later, when they were about to be discharged from Missouri Baptist Medical Center.
Instead, Edwards’ son was admitted to the neonatal intensive care unit because of rapid breathing the medical staff had been concerned about since early that morning. Her baby was in intensive care for a confusing and scary six days.
Edwards and her husband spent 15 hours a day at his bedside, consenting to test after test to figure out what was wrong. The couple are still paying medical bills, which amounted to about $10,000 even with insurance, said Edwards, 31, of University City, Mo.
“It was horrible,” she said. “Ultimately, they did every test under the sun and never found anything wrong.”
Now 18 months old, Hudson hasn’t even had an ear infection since.
The U.S. has seen dramatic increases in the number of neonatal intensive care units and neonatologists specializing in the care of newborns. While advances in neonatal intensive care have greatly reduced death rates, some are beginning to question whether we may have too much of a good thing.
In one of the first studies of its kind, Dartmouth researchers recently found that NICU admissions increased by 23 percent in just five years; by 2012, over half of all admissions were for normal birth weight infants or those born after 37 weeks gestation.
“That is a tremendous change to where the field began,” when units were filled with extremely ill and tiny babies and located in large, urban hospitals, said Dr. David Goodman, a pediatrician and researcher at Dartmouth Institute for Healthy Policy and Clinical Practice. “Very little analysis is being done in the way those resources are being used, and very little work has been done to identify overuse and underuse.”
Dr. Aaron Carroll from Indiana University’s Center for Health Policy and Professionalism Research says the study should give doctors pause. Too often, Carroll warned, medical need does not end up driving care.
“The idea to broaden the distribution was that very sick and at-risk infants could be cared for closer to home and that more deliveries would happen in hospitals where intensive care was available when needed,” Carroll wrote in an editorial about the study. “However, achieving such care meant building many more NICUs. These units need to be busy to pay for themselves. Many hospitals also depend on the revenue these NICUs provide to remain financially sound overall.”
Specialized intensive care is not only costly, it is risky. It comes with exposure to infections and invasive medical tests and procedures. It brings increased stress to families and separation during a critical bonding time.
Dr. F. Sessions Cole, head of the NICU at St. Louis Children’s Hospital, said he tells his trainees that they perform the single most invasive procedure in medicine: separating a mother from her baby.
“It is an intervention we should only do with great care,” Cole said, “with the understanding that the reason we are doing that separation is that we are trying to treat something more critical than separating a mother from her baby.”
Since hospitals began opening neonatal intensive care units more than 50 years ago to care for extremely ill and underweight babies, the neonatal mortality rate has gone from 18.73 deaths per 100,000 births in 1960 to 4.04.
The decline is mostly attributed to advances in care for very low birth weight infants, but few studies have looked at how and when babies of all weights benefit from neonatal intensive care, Goodman explained.
His team was able to take advantage of a 2003 change in birth certificate data that indicated whether a baby was admitted to the NICU. They looked at 18 million admissions in 38 states between 2007 and 2012, at a time when the preterm birth rate in the U.S. was actually declining.
The study was not able to look at reasons why or complications, Goodman said, but the increasing likelihood that a newborn will end up in the NICU, the high cost of this care as well as the proliferation of the units and neonatologists across the country warrant scrutiny.
“We don’t know whether that meets an unmet medical need or whether it’s overuse of medical services,” he said. “We don’t know if it’s care that, on balance, provides enough benefit to outweigh the potential harms and risk of care.”
Goodman’s past research has shown that the distribution of NICUs and neonatologists varies widely and has no correlation to newborn risk or need.
Between 2000 and 2013, the number of neonatal intensive care units in the U.S. went from 806 to 983, and the number of beds in those units has increased 46 percent, from 14,939 to 21,854, according to data provided by the American Hospital Association’s Health Forum. The two previous decades saw even bigger jumps.
Dr. John Yeast, vice president of medical education and research at St. Luke’s Hospital in Kansas City, has studied the growth of NICUs in Missouri since the 1980s, when there were only four. A decade later there were nine, and by 2012 there were 17, his tallies show.
The latest state health department figures for 2015 show an even higher number: a total of 25 neonatal intensive care units with 737 beds.
The increasing access to specialized care does not reflect need, Yeast said. “The delivery rate is flat, and the number of high-risk babies hasn’t changed. Hospitals across the nation have added beds, and it hasn’t necessarily been shown to improve outcomes for babies.”
In fact, Yeast said, preliminary findings from his current research indicates high-risk premature babies do better in large, urban academic hospitals under specialists with lots of experience caring for sick babies.
“It’s a complicated issue,” Yeast said. “If an obstetrician is in a smaller hospital, and he or she delivers a baby that is suddenly sick . that OB is glad a NICU is there to take care of a baby he or she didn’t anticipate in being sick.”
On the other hand, he said, empty beds with high reimbursement rates are tempting to fill. Yeast said he has seen conditions prompting a NICU stay in one hospital but not in another.
About 34 percent of babies in the 85-bed NICU at St. Louis Children’s Hospital are term or normal weight, Cole said. One reason is an increase in opioid addiction. Babies of addicted mothers must be monitored and treated for withdrawal symptoms such as vomiting, diarrhea, convulsions, and poor eating or sleeping.
Newborns also have access to technology that hasn’t long been available, such as immediate life-saving surgery for abnormalities now identified or even corrected in the womb; and brain scans and body cooling for babies deprived of oxygen during labor.
“We are always trying to keep moms and babies together as much as we possibly can, however, there are certainly risk factors associated with the baby’s birth requiring additional diagnostic tests and procedures that are more than what can be done in a mom’s room,” Cole said. “It is something we are always reviewing and looking at.”
For example, Cole said, his unit has developed strategies involving medications and soothing techniques to keep drug-addicted babies healthy in the newborn nursery.
Dr. Gary Dreyer, head of the 98-bed NICU at Mercy Hospital St. Louis, where most St. Louis area babies are delivered, said around 40 percent of admissions involve normal weight babies over 37 weeks. Another factor driving those babies into intensive care, Dreyer said, is the higher percentage of obese mothers. Their babies tend to have trouble controlling their blood sugar.
Dr. Farouk Sadiq, director at Cardinal Glennon Children’s Medical Center, said the 93 NICU beds at his hospital and St. Mary’s have had normal-weight babies making up 47 to 53 percent of patients in recent years. About 40 percent of the patients are referred to the units from other hospitals for highly specialized care, he said.
Goodman said the change in capacity has occurred mainly in small, community hospitals; where health systems are vying for business. Next, his research will turn to studying how neonatal intensive care varies across regions and hospitals.
“That will help us identify patterns of care that are laudable, and patterns that are worrisome,” he said.
Edwards said she would do anything to make sure her son is healthy and is unsure if his six days in intensive care was too much.
“It’s so hard,” she said. “Yeah, in some ways I could say it wasn’t necessary because they didn’t find anything, thank God. But who knows?”
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