Thursday, March 8, 2012

A little over 22 years ago...

...my wife gave birth to our older boy, Joe. That's him in the picture, above, getting some instruction from his old man in the timeless art of grilling. 

"Awright, lissen up: after you flip the burgers you put a piece of cheese on top like this -- see?"

Joe has been an absolute gift from Day One. But that's not what this post is about. 

No, it's about that piece I linked to the other day, "Rick Santorum, Meet My Son: He has a degenerative disease that has left him blind, paralyzed, and increasingly nonresponsive. If I had known before he was born, I would have saved him from suffering." 

So what does this have to do with my son? Let me tell you a little story. 

When my wife got pregnant with our first child she underwent all the usual tests that expecting mothers take. One of which determined that she was a carrier of the genetic disease, Tay-Sachs. What the heck is that?, you may be wondering. (That's what I was wondering.) 

Tay-Sachs disease is caused by a defective gene on chromosome 15. When both parents carry the defective Tay-Sachs gene, a child has a 25% chance of developing the disease. The child must receive two copies of the defective gene -- one from each parent -- in order to become sick. If only one parent passes the defective gene to the child, the child is called a carrier. He or she won't be sick, but will have the potential to pass the disease to his or her own children.

Anyone can be a carrier of Tay-Sachs, but the disease is most common among the Ashkenazi Jewish population. About 1 in every 27 members of the Ashkenazi Jewish population carries the Tay-Sachs gene.

Tay-Sachs has been classified into infantile, juvenile, and adult forms, depending on the symptoms and when they first appear. Most people with Tay-Sachs have the infantile form. In this form, the nerve damage usually begins while the baby is still in the womb. Symptoms usually appear when the child is 3 to 6 months old. The disease tends to get worse very quickly, and the child usually dies by age 4 or 5. 

My wife's mother was an Irish Catholic but her father was Jewish. That, apparently, is where the gene came from. 

So I had to get tested. "Don't worry; I'm almost 100% Irish -- there's no chance that I'm a carrier. (A drunk, maybe, but that's it!)" 

"This isn't funny!" 

"Okay, okay; I'll get tested already!" 

So I went to the hospital and had some blood drawn and -- voila! -- a week later the results came back negative. 

"Toldja!" 

But as I was getting my blood drawn I asked the doctor about Tay-Sachs. 

"So what is this stuff, anyway?" 

"Oh, it's a horrible, grisly disease. Babies usually live a terrible, painful life and then die after just a year or two." 

Yikes! 

"That's why, if both parents are carriers we usually recommend an abortion." 

An abortion! I was speechless. 

Not only was I pro-life in those days, I didn't even think abortion was justified in cases of rape or incest. After all, the baby was innocent, right? And, as for saving the life of the mother, well, who's to say whose life is more valuable? 

But, then ... over the years I would listen to people arguing about abortion and I'd think ... what if I had been a carrier of Tay-Sachs? What then? What would I have done? What would have been the right thing to do? 

And all I can say is: Thank God I didn't have to make that decision. Thank God I wasn't a carrier. Thank God Joe was born healthy. And thank God he's been such a gift

But what about all those young couples who find out that both parents are carriers of the gene? What about them? Shouldn't the decision to go forward, or not, be left up to them and their doctors? Isn't this really a decision for couples -- and not the government -- to make? Isn't this really a gray area, not Black and White? 

I really liked Ms. Rapp's piece. I think Rick Santorum should read it. I think everyone should.

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