Leadership Journal

I was with my son his entire life. Two minutes.

He entered the world of light and air at 8:20 p.m. on November 22, 1991. And he departed, the doctor said, at 8:22.

It seemed a very short time. Too short. My wife, Susan, and I never got to see him take his first steps. We barely got to see him take his first breath.

I don't know if he would have enjoyed softball or software, dinosaurs or dragonflies, machines or math. We never got to wrestle, race, or read—would he have enjoyed those things like his older sisters do? What would have made him laugh? Made him scared? Made him angry?

Those questions swarmed around my soul in the days following my son's arrival and all-too-hurried departure. So many things I wondered. But one question loomed larger than all the rest, haunting me for months: Why would God create a child to live two minutes?

Many tragic deaths can be blamed on human cruelty or foolishness. A stray bullet punctures a tenement wall and kills an infant. A driver loses control of a car and careens into a group of schoolchildren on the sidewalk. Senseless. Heartbreaking. But at least I know where to direct my anger.

With my son, no direct human responsibility could be charged in his death. It was a "chromosomal abnormality" called Trisomy 13. One of the 23 sets of chromosomes developed a third appendage. Despite genetic tests and the expert opinions of doctors, we discovered no known cause for this condition.

As far as I was concerned, this was a design flaw. And the Designer was directly responsible.

I remember the first time I heard the term "Trisomy 13." It was the same hour I first saw my son—as ghostly black-white-and-gray movements on the sonogram screen. In silence, Susan and I watched the embryonic motions as Dr. Silver manipulated the ultrasound, measuring the cranium and the femur and viewing the internal organs.

"Is everything okay?" I asked.

"Let me complete the examination, and I'll give you a full report," he said. I noted his evasive answer and hoped this was merely his standard procedure.

Moments later, he announced his observations in a matter-of-fact voice: "We have some problems. The fetus has a malformed heart—the aorta is attached incorrectly. There are missing portions of the cerebellum. A club foot. A cleft palate and perhaps a cleft lip. Possibly spina bifida. This is probably a case of Trisomy 13 or Trisomy 18. In either case, it is a condition incompatible with life."

Neither Susan nor I could say anything. So Dr. Silver continued.

"It's likely the fetus will spontaneously miscarry. If the child is born, it will not survive long outside the womb. You need to decide if you want to try to carry this pregnancy to term."

We both knew what he was asking. I was speechless. Susan found her voice first. Though shaken by the news, she said softly but clearly, "We believe God is the giver and taker of life. If the only opportunity I have to know this child is in my womb, I don't want to cut that time short. If the only world he is to know is the womb, I want that world to be as safe as I can make it."

PAGE 1 of 4