My Brother, My Pediatric Geneticist

"Why does it matter so much to you to find out exactly what happened?" my brother asked.

We were sitting at a picnic table near Hogan's Fountain while Jonathan and Jasper played in the sprinkler. It was June, and the first time we'd talked in person since Balthazar died. I couldn't tell whether he thought it shouldn't matter to me as much as it obviously did, whether he was being slightly critical, or whether he was just curious. And if it was the latter, was it personal or professional curiosity?

My brother is a pediatric geneticist, which is not a bad thing to have in the family when you are a person who never took statistics, trying to run the numbers on various prenatal diagnostic tests. During the pregnancy I told everyone about my brother the pediatric geneticist. "I'll have to check that out with my personal pediatric geneticist in Columbus, Ohio!" I would say to the midwife and the perinatologist. I'm sure they rolled their eyes behind my back, but it made me feel safer, like I had a guy on the inside. Which in retrospect is ridiculous. Having your own personal pediatric geneticist doesn't do a fuck lot of good, it turns out, when you have to call him from labor and delivery to tell him the baby's dead.

"I feel a responsibility to the child," I said. It was not hard to talk to my brother about the medicine; we'd been back and forth on the phone for weeks. It was excruciatingly hard to talk to him about my feelings. "I mean, if he was murdered, I would try to find out who had killed him."

The number of tests performed after Balthazar died were staggering, and the results trickled in maddeningly slowly. Enough had come in by my six week post-delivery appointment, though, that I could tell the midwife was gently preparing me to never know the answer. She had tears in her eyes as she told me that the autopsy was normal. She also had to tell us that the chromosomal sample taken the day we left the hospital had refused to grow, which meant, because we had not done a cvs or an amnio, that we had no genetic information on Balthazar.

A few weeks later, at our appointment with the perinatologist, he could only run through the sheets of paper, explaining what each test was, and that each one was negative. Balthazar did not die because of Antiphospolipid syndrome, lupus, fetomaternal hemorrhage, parvovirus, cytomegalovirus, toxoplasmosis, preeclampsia, or gestational diabetes. The placenta was normal. The cord was normal. The baby was normal in every way that could be tested. Even I seemed to be normal.

"It shouldn't have happened," he said.

What I told my brother was true; I did feel a responsibility to Balthazar, but one of the ways that manifested is that I wanted some medical proof that I was at fault. Of course I know that fault is an incredibly unfair word to apply. This wasn't a fatal car accident with two opposing auto insurance companies duking it out in court. Even if it was my "fault", I hadn't been driving drunk or texting. I hadn't run a red light, or even been speeding. And Balthazar could in no way be blamed. If it turned out I had an infection, was that my fault? If he had a heart defect, was that his?

But I kept getting a whole lot of nothing. 

Later in the day the perinatologist called back to say that based on some fibrin deposition on the placenta, he thought I might want to be tested for some genetic clotting disorders. My personal pediatric geneticist was dubious, but I went ahead, following my newly-discovered personal philosophy: leave no stone unturned.

That day in the park, my brother told me that his hunch was that there was something genetically wrong with Balthazar, something not obvious at autopsy, something that medical science didn't currently have the means to detect, something that meant that he could not have survived outside the womb. I didn't want to believe him, but I also knew that despite his self-deprecating persona he usually knows what he's talking about. A quality I really hate in him.

Before we both left Louisville I gave him my envelope of fetal demise pictures to look through. I felt for him there, outside the Bristol after Sunday brunch, when I handed him the photographs of his dead nephew and made him select the "best" of them to take back to his colleague. His 18 month-old daughter squirmed on his shoulder. His almost-four year-old son shouted for his attention. And yet I needed him to do his work for me, right there, and then drive his family in their minivan the four hours back to Ohio.

As I waited for the results from the blood tests and for word from my brother I constructed a scenario that made more intuitive sense to me than the one in which something was wrong with Balthazar. My mother has Factor V Leiden, a genetic clotting disorder, and though I already knew I was negative for that one, I could easily have another clotting disorder. A clotting disorder was my body's disorder. I could blame myself for it. Balthazar would remain inviolate.

Of course science doesn't care what makes intuitive sense to you. A few weeks later the results came back and I had tested negative for all the clotting disorders. Though of course there are more clotting disorders than were tested for, the truth did not seem to lie that way.

My brother sent word that based on the photos his colleague thought Balthazar probably didn't have Trisomy 13, 18 or 21. But then, those genetic disorders usually make themselves pretty obvious.

With these pieces of information, I spent the summer trying to absorb the idea that Balthazar's physiognomy was incompatible with life. Obviously I hated the idea, but it eased some of the agony of the what if's: what if I'd gone to the hospital on April 1? Said to hell with the kick counts, this doesn't feel right? What if I'd had a prenatal appointment scheduled for April 2? Maybe he was still alive then. Maybe he could have been yanked out in the nick of time. If he was genetically compromised in some fatal way, none of that would have made any difference.

Then in August I sent my brother all of my medical records from the pregnancy, and after looking them over, he called to tell me what he thought.

"I don't know," he admitted.

He said that there was no red flag, no worrisome pattern that even an ob/gyn might not notice but an eye trained in this kind of thing might see developing. I think he had really thought he would see something, because he is good at seeing. I know he wanted to see something, for my sake.

A moment of compassion here for all of the medical professionals whose job involves telling desperate people that they don't know what's wrong with their dying loved ones. That they don't know why their child died. All these problem solvers, these know-it-alls, these Type A overachievers, having to face the desperate and grieving and admit that they have no answers to give.

I can now add my brother's reluctant "I don't know" to that other trenchant observation that medical science has offered me: "It shouldn't have happened." What, exactly, am I supposed to do with "It shouldn't have happened" and "I don't know"? Because we couldn't both be fine; it's impossible. Full-term fetuses don't die for no reason.

My ob-gyn friend thinks it was a cord accident that wasn't visible at delivery. Lacking evidence for anything else, a cord accident is the perfect gloss. Where do you place blame? It's not really his body, not really mine. It is literally the lifeline between the two. And if somehow it got wrapped around his neck and asphyxiated him, how is that anything but a piece of horrible luck?

I just read an article in the New York Times about a technique that has been developed to quickly sequence the DNA of critically ill babies, with an eye, not to curing them, but to rapidly finding out what kind of fatal genetic disorder they have. The only benefit is to minimize their suffering and to give their families answers. The doctors said they were surprised by how much it helped the families to know what rare genetic defect their dying infant had. It doesn't surprise me. Reasonable people don't expect doctors to save everyone, every time. But even reasonable people want answers, even when there is nothing good about the answers. It's true that Balthazar is gone whether we get an answer or not. Life is about mystery, and living with not knowing, and yadda yadda yadda.

I can live without knowing why some people think homosexuality is a threat to them, why someone dear to me has not been in touch since Balthazar died, why the marketing executive at Atria failed to do her job. I can live without knowing why Balthazar died, if I don't have a choice. But I sure would like to look his killer in the face.