As May waned, doctors in Lafayette, Colo., huddled to discuss 3-day-old Maxwell's clean diaper. Why wasn't his digestive tract functioning? The newborn was whisked 20 miles to Denver, where David Partrick, a surgeon at Children's Hospital, took a series of tissue biopsies. The tests showed that most of the specialized nerve cells that push the intestinal contents downstream hadn't developed beyond the first foot or so. Maxwell's small and large intestines would never work normally.
But Maxwell was luckier than many of the 1 in 5,000 babies born with Hirschsprung's disease. Ranked No. 7 in pediatrics this year, Children's is a top-flight hospital. Its resources include a chief surgeon, Mory Ziegler, who counts Hirschsprung's among his interests. Partrick has treated 60 or more cases. To places like Children's, figuring out how to cope with such conditions is routine, if such a thing is conceivable. Partrick cut free the far end of the small functional piece of intestine and connected it to an opening in the abdomen, or stoma, to discharge waste. Maxwell will spend at least his next several months in neonatal intensive care, nourished through an IV tube while Partrick tries to wean him at least part of the time to a feeding tube snaked into his stomach. Ultimately, he may be put on the list for a total intestinal transplant. "It's not what we envisioned for Max," says his father, Randall O'Reilly, a psychology professor at the University of Colorado-Boulder, "but we're hopeful he'll have a rich and fulfilling life."
The several hundred institutions atop medicine's highest rungs go by different names--tertiary-care hospitals and referral centers are two. Most provide their communities with basic hospital care. But their real worth, because almost all of them are involved in research and teaching, is that they study, diagnose, and treat tough cases like Maxwell's every day--drug-resistant infections, intransigent pain, pancreatic cancer, abnormal heart rhythms.
"Tough" doesn't have to mean rare or hard to treat. It can mean an approach or technology is required that is unavailable at most local hospitals, such as zapping a brain tumor with radioactive beams from different directions or replacing a knee using small incisions instead of open surgery. As physicians absorb new methods and technologies, what is tough today may become near ordinary tomorrow. It wasn't so long ago that having heart bypass surgery in a community hospital was unthinkable, but now that's where roughly 40 percent of these operations are performed. Here are a few examples of times when extra medical firepower might be worth seeking.
A child needs to be hospitalized
As medical students learn early on, children aren't miniature adults. Their immature bodies metabolize anesthesia--all drugs, in fact--differently, with less room for error, so doses need to be carefully calculated and administered. Working on tiny veins and organs is harder and injuring them easier. Tools have to be scaled down. Medical routines, or protocols, that govern how certain conditions should be treated are not written the same for children as for adults. "Wilms' tumor, a cancer of the kidney in a young child, is managed totally differently from cancer of the kidney in an adult," says Ann Kosloske, recently retired from a long career as a pediatric surgeon at many academic centers.
Top pediatric facilities bring a large, child-focused team to the table. "There are some spectacular community hospitals," says Ziegler of Children's Hospital, "but it's unlikely that most of them have a complete pediacentric support system--the anesthesiologist, the social worker, the play therapist, people who are expert at drawing blood from children, labs that can work with very small amounts of blood."
This argues that parents should seek a top hospital even for a child's overnight stay, says Peter Pronovost, medical director of the Center for Innovation in Quality Patient Care at Johns Hopkins University School of Medicine. "If a problem or procedure is big enough for a child to be admitted," he says, "it's big enough to look for the best possible hospital." That's a little extreme for Kosloske, the first pediatric surgeon in New Mexico, where following Pronovost's advice easily could mean driving hundreds of miles.
But it's not all that different from referral guidelines issued in 2002 by the American Academy of Pediatrics. They advise primary-care doctors to refer all children from birth to age 5 who need operations not to general surgeons but to pediatric surgeons, who have special training. All children, period, should go to surgeons with relevant pediatric expertise for a long list of specific conditions, such as removing the tonsils of a child with heart problems or correcting undescended testicles. There are fewer than 1,000 board-certified pediatric surgeons in the country, and they work mostly at large tertiary-care centers where their skills are constantly in demand. But having a local general surgeon take on a difficult condition and then recognize the need to refer the child to an advanced center "isn't in the child's best interests," says Kosloske, who directed the final polishing of the AAP recommendations. "It's better to get them where they need to go right away." The guidelines are publicly available (aappolicy.aappublications.org, click on "AAP Policy Statements") and can be inspiration for questions to ask a pediatrician.
For more information, continue to Part 2 of our story.