by Deana Chadwell 4/12/14
Twelve years ago our third grandson was born and then, 18 days later, died. It was not a shock that Conner left so soon; we had known for several months that he was beyond fragile, but what we didn’t know is all that he would teach us in such a short time.
I’m going to talk you through some details, some unpleasant details to try to share a little of what we learned. I suppose the most important things we absorbed are not things we can really talk about – as Edgar Lee Masters said “And for the depths, of what use is language?” But a little of it can be reduced to speech.
Conner was a trisomy 13 baby — 1 in 10,000 live births are. This condition is also called Patau Syndrome. During conception each of the 23 chromosomes splits in two during the original division of the fertilized egg. We take for granted that this division process will go well. But it doesn’t always. For Conner, during that first cell split the 13th chromosome ended up with an extra copy. No big deal? It’s only one chromosome – how much damage can that do? Quite a lot.
When scientists started studying chromosomes they numbered them. The chromosome that carries the most genetic information is #1; the one with the least is #23. It is #23 that determines gender, and gender only – an extra chromosome here will produce a person with androgynous sex characteristics, but that is the only system affected. If a lower chromosome produces an extra copy – say a #2, or a #5 then that fetus will be aborted – it will not be viable. A great many miscarriages are the result of a trisomy problem in an important chromosome, many so early in the pregnancy that the woman doesn’t even know she’s been pregnant.[pullquote]He didn’t suffer, didn’t show any signs of pain, for which we have always been grateful. But he did struggle; his body struggled. From a purely human perspective he had little to live for, but that little body did not want to give up.[/pullquote]
Our little Conner’s body was compromised in many ways. The two lobes of his brain were different in size – we’ll never know how that would have affected him, though longer-lived Patau babies do have severe cognitive disorders. His kidneys were also uneven. His little legs were crooked, bending forward at the ankles – he wouldn’t ever have walked. He had 6 fingers on one hand and 5 and a half on the other – a tiny, magical half-finger perched on his right pinky. The irises of eyes were more oval than round; his pointy ears gave him a sweet little elfin look.
We never knew whether or not he was seeing and hearing well. Probably not. His palate was severely cleft so he had to be tube fed. Many of these abnormalities would have robbed him of any quality of life, but the problem that stopped his life was with his heart. It was on the wrong side of his chest, which isn’t in itself life threatening, but it was also missing the right ventricle.
When Conner was still with his mother that didn’t matter. His body was being fed her oxygen, but after his birth his heart had to struggle to send blood up through his lungs to re-oxygenate. As he grew the job became more and more difficult. We knew when he was starting to die because his color took on a bluish tint.
He didn’t suffer, didn’t show any signs of pain, for which we have always been grateful. But he did struggle; his body struggled. From a purely human perspective he had little to live for, but that little body did not want to give up.
Which brings me to the first thing I learned – I gained a profound respect for the will to live that is implanted in all of us, even in those who have no reason to. Time after time as we took turns holding him the night he died; he would stop breathing, be still for a few seconds and he’d shudder and gasp and hold on for a few more minutes. Over and over. I’m not even sure his soul was still there, but his body was doing its job as well as it possibly could. Such huge determination in just five pounds of body was awesome to watch. Our being alive must be profoundly important or our bodies would give up much more easily. In spite of his problems, Conner was programmed to live.
As I listen to the debates these days about abortion, about evolution, my opinions are vastly shaped by Conner’s short presence on this earth. This is what I realize that he taught me.
• I learned that conception is nothing to sneeze at, nothing to take for granted. I had had no idea how complicated, how precise, how delicate the process is. Every pregnancy that involves a well-formed child is a miracle. With that first cell division there are 23 things that could go very, very wrong, to say nothing of all the subsequent subtle hormone balances that must occur at exactly the right times. The intricacy and astounding fragility of this process should leave us all with the awareness that at each conception something earth-shaking has taken place.
• I learned, as a corollary, that this very intricacy, this unlikelihood of it producing a viable child, totally negates the possibility of this all being a product of blind natural selection. Darwin spoke of the simple cell. We now know that there’s nothing even remotely simple about it – whether it is a recently fertilized human egg or an amoeba, the complexity of each is mind-boggling. Watch either of these short videos to see what I mean: The Stages of Mitosis • Molecular Visualizations of DNA
• In that vein, I also came face-to-face with what genetic mutation – the driving engine in natural selection – looks like. Mutations are not helpful. Linguistically, we understand this – to call someone a “mutant” is not a compliment. Nothing that was amiss with the body Conner came to was to his advantage. Nothing about it was an improvement. I’ve come to see genetic mutation very personally – it cost us a grandson; it did not give us a super-child.
• And I learned that a baby — a healthy, functional baby — is a terrible, horrific thing to waste. Scientifically, we don’t have any idea when a human soul and its body are introduced, and theologically we have only a few biblical references that discuss the issue and then only tangentially. But Conner taught me that the question – When does life begin? – isn’t the important question. The point is that it does begin. No pregnancy would ever take place without the will of God, without there being a plan and a purpose for that child. And I suspect that every baby comes with the same kind of determination, the same intense will to live that Conner had. Regardless of whether the child becomes a human being at conception or at birth, God willed it into existence and respect must be paid to that will and to the will of the child himself. Respect must be paid, honor and awe must be present.
We have been graced, tremendously blessed with 5 other grandchildren: Ben graduates from engineering school this spring; Maggie, his younger sister, is our tall, slender, breathtakingly beautiful model; Aidan is our lanky, handsome family comedian; Our elegant Julia, who was born 2 years after Conner — a gracious, brilliant princess; and her little sister Violet who sparkles with life, enthusiasm and curiosity complete the family. We have been blessed. And someday we’ll get to see Conner again and he will be whole and we’ll have eternity to get to know him.
When he died, Maggie, who was about 8 years old then, asked if Conner would be a baby or a grown-up in heaven. We don’t know, but it will be so cool to find out.
Deana Chadwell blogs at ASingleWindow.com. • (1793 views)