"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.
3. Don't just rely on Google for an understanding of what you face. A new diagnosis often has parents searching online like mad to decipher what their child, and the family as a whole, will need to handle. Much information—trusted and otherwise—can be found online, but your computer isn't the only source. Children's hospitals commonly have Parent and Family Resource Centers that can be incredibly useful, says Beverley Johnson, president of the Institute for Family Centered Care. Staff that point parents in the direction of disease- or treatment-specific literature and research means not having to wade through the online morass.
4. To get an appointment with an elite specialist, enlist the pediatrician. Though nothing bars family members from calling a top-notch specialist's office to get an appointment, your child will likely be better served if the pediatrician works the system on his or her behalf. "That's the easiest way to get in," says Maria Britto, pediatrician and director of the Center for Innovation in Chronic Care at Cincinnati Children's Hospital Medical Center. That's true even if the two doctors don't know one another, she adds. The pediatrician will pass on details of your child's medical history, physical exams, diagnostic work done up until that point, and also have a conversation about the urgency of the case. Families should also be aware that getting an appointment with a world-renowned "super specialist" might actually mean seeing one of the fellows training in that person's office. "You might get the last five minutes of the appointment with the famous doctor," explains Britto. To avoid frustration and heartbreak, ask exactly who your child will see and what role the sought-after specialist will play when booking the appointment.
5. Ask about volume and quality measures, but also about the depth of the care team. Yes, high praise from a co-worker's sister whose child had the same condition matters. But numbers are very important tools in deciding where to have your child treated—so don't shy away from asking about the data. Generally speaking, an important gauge of a doctor's or hospital program's worth is high volume. The more similar patients treated, the better. In adult medicine, such numbers are relatively accessible—in part because adults tend to have more surgeries and treatments overall than kids do, and because Medicare collects much of the data. In pediatrics, however, robust volume data tends to be available only in certain areas like cancer, organ transplantation, and cystic fibrosis, says Britto. So while "volume is still a reasonable thing to ask about" in pediatrics, she explains, "You can't hang your hat on it." This is because a good number of children's procedures and treatments have relatively low volume altogether, making it difficult for a family to go on volume alone.
Therefore, parents will need to dig deeper. Ask how the hospital tracks its own success in treating your child's disease—the important outcomes, the complications to avoid, and how their record compares with that of other centers. "If they can answer those questions, that's a good start," adds Britto. For example, with severe asthma, what percentage of patients end up having to be admitted to the intensive care unit, need to be intubated, or get serious cardio-respiratory treatment? Or in a heart surgery, what is the infection rate and what percentage of kids can play without limitations after healing from the procedure?