When a Child Truly Needs the Best
No, getting the right care at the right place isn't easy. Yes, you can make it happen
It's obviously a good sign when the same experts' names keep coming up in conversations and Web posts. But parents still should ask for data and second opinions. "It does not offend me," says Donna Caniano, surgeon in chief at Columbus Children's Hospital. "I think that's good parenting."
Numbers. When any doctor provides a diagnosis or proposes treatment, expert or otherwise, says Caniano, ask whether the place recommended for care is the best choice and if other experts should be consulted. These questions are just as valid even before a child's birth if your pregnancy has been identified as problematic, says Billie Lou Short, chief of neonatology at Children's National Medical Center in Washington, D.C. Not all neonatal ICUs are equal—there are three tiers—and a high-risk newborn needs a high-level NICU. (Level 3 NICUs are for the riskiest babies and are defined as 3a, 3b, and 3c; the smallest and sickest infants belong in a 3c facility.) Ask the obstetrician where you should give birth, says Short. "The important thing is to not be bashful." She has saved many a newborn like Mi'Kal Gray—whose lungs were damaged during birth when he inhaled fecal-contaminated amniotic fluid—by putting them on an infant-adapted heart-lung bypass machine for a few days or weeks to let their injured lungs or heart rest and gain strength.
Numbers mean something, just as they do for adult conditions. "It's very, very difficult to have high quality without high volume," says Stephen Muething, a hospitalist and assistant vice president for patient safety at Cincinnati Children's Hospital Medical Center. But nothing should be assumed, he adds: "Volume is not the same as quality." Understanding the definition of successful treatment is critical. In juvenile rheumatoid arthritis, for example, the key is the percentage of kids with complete joint function after a year of treatment. With a sickle cell anemia treatment plan, it is the number of pain-free days. Getting such stats out of hospital administrators or doctors' offices can be difficult, says Muething, and there are no large databases comparable to the one that covers Medicare patients.
Even when numbers are available in abundance—in pediatric oncology or cystic fibrosis, say—they can only partially inform a decision of where to seek treatment and from which doctor. "After all the data and all the talking, it comes down to your gut"—and the family's needs and limitations, says Muething. Many families can't or don't want to take a child hundreds of miles from home.
These decisions, as Rana and William Meyers found, can generate heat. Their daughter, Lily, 2, was born with erratic blood sugar and had several seizures in her first few months of life. Medications controlled her blood sugar, but the rambunctious toddler was becoming less willing to sit for her thrice-daily shots.
Lily's doctors at Rady Children's Hospital-San Diego suspected hyperinsulinism and urged her parents to get care at CHOP's congenital hyperinsulinism center. If a small, defined part of Lily's pancreas was the cause, it might be cut away, avoiding total removal of the organ or the possibility of diabetes—and CHOP was the only center investigating a radioactive dye that could make even a tiny area stand out in a PET scan. Lily's meds were helping, argued some family members; why make her a guinea pig? "We wanted to make her well," says her mother. The center identified a minuscule offending portion, CHOP surgeon Scott Adzick deftly plucked it out, and Lily, almost unbelievably, was cured.
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