The upsides of Downs

I started real med school a few weeks ago, and it really hasn't been so bad so far. Yes, you do have to study more than you ever have in your life, but considering you don't have to work a job like many of us did in college, and that few of us are getting laid, there is plenty of free time in a day. It sure as hell beats working full time, and Cleveland is so damn cheap, I can still afford most things (alcoholo poisoning for less that $20 anyone?). So most days I wake up, with a vaguely positive attitude towards med school, bordering on largely ambivalent. Every 5th or 6th day, I have a few hours where I think, "What the f-ck am I doing with my life?" I had a moment like that yesterday, at the end of lecture. I had just risen from my customary nap, and I was a little groggy, perhaps even grumpy. Regardless, I wasn't feeling generous, and the didactics on limb development, images of fibroblast growth factors, and the incessant fall of nervous fingers on much used keyboards, in the dank cave that is our lecture hall, didn't help my mood. So when I look to my right, and see the girl next to me reading about current events on Fox News, I felt pretty pissed off. Really, Fox news? I love fiction too, but I get it from novels and comic books....anyways, I was in a dour mood for a few hours after that.

But to balance out the "f-ck my life" days, we have days like Tuesday. Days where you walk out with a greater appreciation for the human condition, and the sheer balls it sometimes takes to walk this earth. We've been studying development, and naturally, chromosomal defects are part of that. Trisomy 21, or Down's syndrome has been covered extensively, and we've gone into the clinical correlates as well. The disorder is typically screened for in the 1st or 2nd trimesters, and if identified, parents are given the choice to abort or not. More than 90% do. Damn....that's a lot. When I first read that statistic, I had no qualms with it. It's not that I think of a person's life with Down syndrome as less worthy than that of a normal kid's. I just figured the cost of raising such a child, in time, tears and money, would be too much. And so it seemed totally natural to me that you'd want to abort that fetus. And apparently, a lot of doctors encourage patients to do so.

To put a human face on it, our faculty had parents with Down's syndrome kids come in this morning, and the hour and a half we spent with them changed a lot of my assumptions. The mom we were with had six kids...shiiiit (trangely, she wasn't as Jerry Springer as you'd expect, I think she just liked having babies). The 5th kid was a Downs kid. She brought her baby with Downs, and the youngest one to the discussion; she had that autopilot tendency most harried mothers do, such that she could maintain conversation while breastfeeding one kid, playing with the other, and still making eye contact with each of us. And she looked tired, as mothers, particularly those with a half a dozen children, do.

But what she had to say was not something I had heard before. First, the Downs kid, George, was not that much extra work. Sure, he required more attention than the other children, but it wasn't like they were going broke caring for him (particularly noteworthy given that her husband was a teacher, and she only worked one day a week as a physical therapist).

Moreover, she went so far as to say that George was a blessing. Having him, she had really learned how to stop keeping up with the Joneses, because as she noted, "Once you have a kid with Downs, you really can't." She said it brought her family together, by the simple act of caring for George. She said that not only did she fall in love with George as one would any child, but that the love was more intense in a way, given that she would always be watching out for him. And she pointed out that while George would probably never go to college, or win any standard accolades, he would almost certainly never become a drug addict, or pain her in the numerous ways children can cause their parents endless grief.

So while George is mentally retarded, has congenital heart defects, will always rely on his parents, and will likely develop Alzheimer's type dementia by the age of fifty, his existence may be far more than tolerable. It could have a vital role in his family and community. There is no right answer, and up until now, I had been hubristic enough to think that aborting such kids was the scientifically sound thing to do. And it may still be, but that paradigm may be just as narrow-minded as those who seek to stop stem-cell research because they consider it equivalent to murder.

I make fun of all the moral, touchy feely stuff we talk about in our medical school ethics class, but that doesn't mean I'm not hearing it. If anything, humor is a coping mechanism to deflect awareness of the fragility of the human condition. And given that fragility, more than anything, George's mom impressed on me the need to approach such crossroads carefully, where science intersects with intangible, incalculable elements of emotion, value, ethics and all the related fuzziness. I will tread carefully from here on out....