Photo courtesy of Rachel

"If it's too personal of a question, we understand," is how Anna and I prefaced the conversation...

Thomas Jones, a one-year-old boy, had presented to the hospital after vomiting and passing so much pasty, bright red stool that it filled his diaper. Marsha and John, his very worried parents, called 911 and an ambulance rushed him to the hospital.

The history was classic for Meckel's diverticulum, a condition where you’re born with an extra “small pouch” (a former embryonic structure that should've disappeared as the fetus develops) in the small intestines, containing tissue not normally found. In Meckel's diverticulum the tissue pouch most commonly contains gastric mucosa (stomach tissue) that produces acid, which drips on the small intestine’s mucosa, causing it to bleed, sometimes heavily. Though the history fit, the thing was, Thomas’s Technetium 99 scan, which “lights up” the area in the small intestine containing the acid-producing stomach tissue, was negative.

Colonoscopy revealed nothing helpful. Endoscopy found a small ulcer in Thomas’s duodenum, but the pediatric GI specialist felt like the ulcer was too small to be the source of so much bleeding, and was instead a stress response to all the bleeding. Meckel’s diverticulum only develops in the small intestine, but due to camera size and length of the small intestine, it’s impossible to scope it. So the question became, should we proceed with exploratory surgery?

One surgeon was fairly convinced the negative T-99 scan proved the small ulcer was the source of bleeding. However, more experienced and gray-haired doctors had seen a Meckel’s with negative T-99 scans. Eventually, after a long discussion among all doctors involved, the surgeons headed to the operating room for an exploratory laparoscopic surgery—which indeed found a Meckel's diverticulum.

Throughout this process, Thomas' parents were actively involved in all of his care, informing the medical and surgical teams of any little change in his behavior, noting his daily hematocrit levels, asking reasonable questions you'd expect from intelligent people with no medical background. Could this be a bacterial cause? Why would a baby have an ulcer? Before agreeing to go ahead with the exploratory surgery, Marsha and John wanted to hear each doctor's opinion, taking a long time to weigh the pros and cons of whether or not to proceed.

The Joneses weren't from the hospital's immediate neighborhood, and unlike most of the parents I usually see, they were college educated. Marsha had been a pharmacy tech, turning into a stay-at-home mom when Thomas was born. John worked as an architect, focused on building energy-efficient houses. Both seemed very contemporary and information-savvy, so I was pretty surprised when it came out that Thomas had not received any of his childhood vaccinations—by his parents’ choice.

From talking with them, I'd picked up that the Joneses were a "crunchier" kind of folk—Tom had been born at home in the presence of a midwife, and the family preferred to eat only organic, non-processed foods. But they certainly weren't the type to rush Thomas to an herbalist once his bleeding became severe. I just couldn't understand it. How did smart-seeming people come to such a (in the opinion of many pediatricians) bad medical decision?

Curiosity was killing me and my friend Anna, who was also on pediatric surgery. We'd developed a pretty good relationship with the Joneses, so a few hours before Thomas’s discharge, we decided to finally ask why their baby wasn't vaccinated.

The question is challenging, but Tom’s parents are open to answering it. "There's a lot that went into making the decision," John and Marsha tell us. For almost an hour, Anna and I question away. What information did you base this on? What specifically were you concerned about? What will you do when Thomas starts school? We really want to understand their rationale.

Marsha had taken on the research responsibility, since John was busy with work. Her sources ranged from Internet sites focused on vaccination and the CDC’s website to books by doctors and midwives. Interestingly, the Joneses are from an area where not vaccinating kids is very common, and parents simply sign a release form before children enter school. While they’d heard of the infamous (and several times retracted) Lancet article claiming a link between autism and vaccines, the Joneses appear to be most concerned about the level of chemicals or “toxins” present in the vaccines’ preservatives that Thomas could be exposed to.

“I just think the severity of the diseases is overblown,” shares Marsha. “I mean, a friend’s kid had German measles and didn’t die. Plus, with good sanitation in the US, there’s a really low chance Tom would catch any of the diseases. ”

This statement Anna and I definitely take issue with. You can die from whooping cough, we point out. And polio was a devastating 20th century disease, leaving thousands of children and adults paralyzed, up until the late 1940’s—a time where there was good sanitation. Polio rates decreased only after a vaccine was developed. Also, we mention, if everyone stopped vaccinating, herd immunity would be lost.

Back and forth, the exchange continues, remaining friendly, as Marsha and John explain their reasoning, and Anna and I counter with what we know. Anna's very knowledgeable on the subject—before medical school she worked as a paralegal for the Department of Justice in vaccine litigation. As the conversation winds down, I have to know, “What would you do if Thomas suffered a serious side effect from a disease you could’ve prevented by vaccinating, like infertility from mumps? How would you feel about the decision then?”

“As parents, we feel like we’re making the best decision based on what we found out there,” Marsha tells us. "Given what we’ve gathered, we’re just not convinced that the risks of vaccination are worth it," adds John.

Sometimes, it’s the nonmedical issues—religious beliefs, fears, rumors, or even something like the way a medicine tastes—that end up having the most impact on a patient's medical care. Being on the wards, especially with this example, really highlights how much medical successes really depend on patients—and for patients who are minors, their parents. Doctors know the interventions required for particular diseases, but it’s always going to be the patient’s decision to take their daily pills, go to physical therapy, or get the flu vaccine. You could be the best doctor in the world, but your patients won’t benefit if they don't follow your advice. And there's no class in med school on convincing patients to listen to doctors. All we can do is educate, communicate, and hope patients believe what we have to say enough to follow through.

Anna and I say goodbye to the Joneses, thanking them for an interesting discussion. "Now that Thomas is walking, and we can’t control his exposures as much (i.e. rusty nail with tetanus), we’re going to do more research, and might consider different options," John tells us.

It's the best that Anna and I can hope for.

ODDS FACT: The odds a child younger than 19 months has been vaccinated against measles, mumps, and rubella are 1 in 1.14.

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