It is quite unsettling enough to hear a physician exclaim, “We've never seen a case like this before,” but when the surgeon you've known for more than 2 decades is talking about your 2-kg, not-quite-33-week-gestational-age granddaughter, it's frightening.
Little Hannah Margaret's entry into the world had begun to get complicated when her mother developed massive polyhydramnios and an ultrasound suggested that the baby's stomach was enlarged. We knew that something might not be quite right with her GI tract, but we were relieved when the neonatologist could pass a tube easily into her stomach. We were even more relieved when a limited-contrast study demonstrated continuity well into her small bowel. But continuity is a relative thing, and it became clear that her stomach did not empty normally.
At endoscopy, the antral region of her stomach was swollen and inflamed, and the gastroenterologist could not enter or even adequately visualize the pylorus. Trying hard to be the silent and supportive grandparent, I listened patiently as the pediatric surgeon at our tertiary care medical center outlined for my son the options for dealing with what he suspected was a very rare antral web. Unclear exactly what would be found until they opened her abdomen, he couldn't predict what procedure they would perform, but there was a high likelihood that little Hannah would be left with a dysfunctional pylorus.
When I sensed that my son had asked all his questions, I asked in my most naive voice if there was any chance that this outlet obstruction could be dealt with endoscopically. The answer was no.
Because of some scheduling issues, we had several days to prepare ourselves emotionally for the surgery. For 30 years I had relied on the magical skills and astute decision making of these same pediatric surgeons to rescue my patients from a broad range of congenital anomalies and anatomic misadventures. However, the plan that they outlined for my own granddaughter made me very uncomfortable. The rarity of her condition and, hence, their inexperience, was unsettling.
But what was the best way to act on my concerns without seeming to be a meddling grandfather who felt that the surgical expertise that had been just fine for his patients for 30 years was not good enough for his own granddaughter?
Not wanting to disturb my son's confidence in the care his daughter was receiving, I decided to do my research under cover. I began by bouncing the scenario off my partner, who would eventually become Hannah's physician. I then spoke to a pediatric gastroenterologist in Boston with whom I have shared patients since my residency. Both physicians supported my concerns and were, in fact, more troubled than I was about the proposed plan.
But when it came time for me to suggest a second opinion to my son and his wife, I was hesitant because I didn't want to offend the people who had been my go-to guys for more than 3 decades.
Even though I know it is often in the best interest of the patient, maybe only because it will give the parents peace of mind, I don't like it when families question my diagnosis or therapeutic plan and ask for a second opinion. Many times they have sensed my own poorly disguised discomfort with the situation—the cases in which I'm planning to recommend another physician if things don't improve by the next office visit—and beaten me to the punch.
In my granddaughter's situation, I was able to step back into the shadows and allow my saintly partner to do the dirty work of arranging the trip to Boston. And I am happy to report that the story has a happy ending. Even though the big-city specialists could remember only one similar case, they were willing to attempt an endoscopic approach. You should be reading about her successful procedure in a medical journal next year.