No parent anticipates that a child will have to contend with illness, hospital stays, surgery, or the nasty side effects of medical treatment. But more than 5 million children have a chronic condition, from diabetes to a congenital heart defect, that limits their activity and generally requires medical attention. Children undergo more than 2 million inpatient procedures and nearly 20 million outpatient procedures annually, according to the Centers for Disease Control and Prevention. And nearly 22 million visits a year bring panicked families to the ER, says the CDC. In other words, Mom and Dad, there's a pretty good chance your child will interact with the hospital system.
Finding (and choosing) the right doctor, care team, and hospital requires parents to roll up their sleeves and do careful research, pressing doctors and nurses for answers to tough questions. "No matter how good the physician is," says James Mandell, a surgeon in pediatric urology and chief executive officer at Children's Hospital Boston, "there is nobody that is more committed or interested in that child's care than you." Here are 12 tips for parents seeking the best pediatric hospital care:
1. Seek out a children's hospital. There are approximately 5,000 hospitals in the United States, and fewer than 150 have comprehensive depth of expertise in kids' medicine. Yet most experts will still tell families to find a children's hospital, should a son or daughter ever need care. Why? Because pediatric medicine is not simply a miniaturized version of the treatment an adult would receive. "Everything is different," says Mandell, from having the appropriate—and correctly-sized—equipment on-site to how a child's vulnerability to disease differs from older patients'; more so than with adults, "there is a very small window between being 'OK' and 'not OK.' " Many experts believe that certain routine care performed in an adult hospital that has a lot of experience with the procedure in kids is reasonable and safe. But there are gray areas, and some draw the line between an adult hospital and a children's hospital at the need for anesthesia—be it for surgery or to get an imaging test like an MRI. Anesthesia is probably the most important consideration, Mandel thinks, because "kids are so vulnerable to changes" that are in the purview of the anesthesia team. For example, a baby can go into cardiac arrest just from being too cold, he explains; not only does the anesthesia team deliver drugs, it monitors and controls a patient's temperature, oxygen levels, blood pressure, heart rate, and fluids, among other things.
[See America's Best Children's Hospitals and search for one near you.]
Pediatric experts agree that certain areas of care are nonnegotiable: When a diagnosis is complicated, for example, or an illness is particularly severe. For Stuart Siegel, a hematologist-oncologist and director of Childrens Hospital Los Angeles's Center for Cancer & Blood Diseases, working among a team of pediatric specialists is absolutely critical to delivering top care to his young patients. For example, the pathologist who scans a tumor for the presence of cancer in a child must be adept at reading subtle patterns that differ considerably from those in adult cancers—a task he trusts only a pediatric pathologist to do. Indeed, Siegel has seen many patients who were initially misdiagnosed by adult specialists, for example, as having non-Hodgkin's lymphoma when they actually had Hodgkin's—separate diseases with distinctive treatment protocols. "Across the pediatric spectrum," he explains, "the majority of times there are unique aspects [of the disease in a child] that will be missed by an adult specialist or generalist."
2. Learn the disease and how success is measured. Not every condition is curable. Understanding the language and scope of your child's condition—say, that juvenile arthritis is often measured in terms of the number of pain-free days and range of motion in the joints—can help you assess not only your kid's well-being but also how well the care team is performing. Sure, becoming well versed in your child's illness can feel daunting. Start with questions, and be persistent.
"I didn't know anything until I had to," says Lynnie Reid, of Dorchester, Mass., "but when your child has persistent chronic disease, you never stop." Of her five children, two have a rare form of sickle cell anemia and one had severe asthma growing up. Her children have all eventually gotten their care at Children's Hospital Boston, where she is now co-chairing the Family Advisory Council. In fact, the knowledge Reid acquired through her 15-year-old son Amiel's experience with sickle-cell anemia lead her to push for better care for her 32-year-old daughter, Damali, who has the same rare form of the disease. An experimental treatment that Amiel got through a clinical trial at Children's, which involves chemotherapy though he does not have cancer, has helped him tremendously, says Reid. So she pressed Damali's care team at Dana-Farber Cancer Institute to hire a nurse with the specific training to offer the protocol. She went through the proper channels and arranged a conference call between her children's doctors to bolster her pitch. Her formula? "I just pushed and pushed," she says.