Children's hospitals are havens for little ones who need major surgery. But whether it's a heart to be mended, a spine to be straightened, or a tumor to be removed, surgery runs against the currents of what parents ever expect. Children are supposed to be healthy. Untouched. Perfect. That it might be otherwise is a jolt to moms and dads. But so is the need for them to be surrogate patients on behalf of their children, doing whatever they can to make their care good for a lifetime. That means working with their pediatrician to find the best place and, even more so, the best surgeon.
To be sure, gifted hands count. Unlike pills that come in uniform lots, surgeons have varied talents. Some are simply more deft than others. Generally, the most skilled are those who do the most cases—and the most complicated ones. They tend to gravitate to major centers that provide talented teams, sophisticated technology, and a learning environment that are crucial to the success of relatively uncommon procedures.
Dexterity, high volume, and a supportive setting are not enough, however. The brain of a good surgeon has well-honed connections among physical prowess, insight and understanding, and human compassion. This triad makes for great judgment, which plays out even before the patient enters the or. In fact, the most important meeting may be the one in which parents talk to the prospective surgeon about whether an operation needs to be done at all. "Good surgery on the wrong patient is just as bad as bad surgery on the right patient," says Ben Carson, director of pediatric neurosurgery at Johns Hopkins Hospital.
Seems obvious—but doctors are not always unanimous about how best to deal with a problem, especially a thorny one. There may be alternatives to surgery, or more than one surgical approach, or maybe surgery should be delayed until the child is older.
Here, for example, is 8-year-old Payton, a healthy-looking little girl who at 18 months developed recurrent seizures from a treacherous tumor buried deep in her brain. Treacherous because it was progressing, and treacherous to remove. She had been turned down for surgery at several places, until her parents found Carson.
"It's near her brainstem; it's near her major vessels," Carson remembers telling them. If the tumor runs its course, he said, "nothing good's going to happen." Surgery to remove the whole tumor, on the other hand, might be deemed a great technical success but could leave her paralyzed or with a stroke. His approach—then and now—was to take out as much as he could to control the problem but preserve neurological function. During the operation, he would have to rely on his experience and judgment. That can't be bottled. One surgeon simply may have a better sense of what is right to do than another.
Compassion, too, is wired into the makeup of some surgeons more than others and instinctively brings parents comfort and trust. However fancy a surgeon's reputation, however famous the institution, every parent must ask: Am I ready to put my child's life in his or her hands? What you want to hear is Carson's response to people who frequently ask him what his most important case was: "the last case that I did."
Just ask. The hospital and its doctors are there to serve you. If you are uneasy, know there are other options. General pediatricians have inside knowledge on specialists and will help with referrals and second or third opinions. Don't hesitate to ask around on your own as well. When you meet with surgeons, quiz them about their level of experience and the outcomes of their operations, and ask whether you can speak to the families of former patients. If possible, talk to nurses or others who have witnessed their work firsthand. You might think you don't have such contacts. But there's always someone who knows someone.
At times like this even people you barely know are ready to help if only you ask. Be persistent with calls to doctors' offices and if need be to insurance companies. And if the talent is not in your backyard, think about traveling to a specialized center. Disruptive and unsettling as all this may seem, that parents can become actively involved on behalf of their vulnerable and struggling little ones as never before is a blessing. And for that we have to thank a parent-friendly culture, well nurtured in the world of children's hospitals.