Saturday, June 30, 2007

The Fair was Good.

We had a good time at The Fair this year. After a few years of loading up on discount tickets for rides, running out, buying more, trying to calculate the cost - we've just given in the last couple of years and bought the one-price, all you can ride wristbands. They and the cost of admission went up a good chunk, this year. The good news is that we've learned to pick a weekday, and this year the planets aligned to bring us quite good fortune: Thursday was wristband day, Steve and Rita could meet us, and Steve White was playing!

Emma loves roller coasters. She has proven to be pretty fearless. I took her with me on the big bumper cars. She started to get upset with the first collision, but was giggling by the end of the ride, figuring out that it was supposed to be that way. Sam had the pleasure of his buddy Ryan's company, they did a pretty good job of tolerating the rest of us. The second ride, the teacups, I obliged Sam by nearly making him sick, as requested. Emma oohed and aahed her way through the rides, taking on some of the bigger-kid roller coasters this time.
This was Steve White's 18th appearance at the Fair. It's a venue that we can attend, kids and all, and it's usually as it was, this year, in the early evening when sitting down is heavenly - to watch and hear him play, divine. He is truly an artist who's combined technical skill with 'a soul for sound' to make music that's unique. While I hope he becomes as rich and famous as he ever wants to be, it has been one of the bright spots in my life to "discover" him, share his music with my friends, and exchange an occasional email with the guy.
Spending time with Steve, Rita, and Corrinna C. is always great, of course. We got in a few rides, after that, loaded up the kids with junk and ice cream, had some fried stuff, our own selves, and made it back home with no disasters or wardrobe malfunctions. The kids were good, the breeze off the ocean was steady, and we only got sunburned in a few places. Overall, a very satisfying day.

Friday, June 22, 2007

We're #1!

I’m here to report that the United States of America is leading the way in cost-effectiveness when it comes to the diagnosis and abortion of children with Down Syndrome.
Here is a link to a 2000 study by the Division of Maternal-Fetal Medicine, the Center for Perinatal Health Initiatives, and the Division of Clinical Genetics, Department of Obstetrics, Gynecology and Reproductive Sciences, University of Medicine and Dentistry of New Jersey, Robert Wood Johnson Medical School/Saint Peter’s University Hospital, New Brunswick, New Jersey; and the Department of Pediatric Dentistry, University of Connecticut Health Center, Farmington, Connecticut. There was no easier way to say that, sorry.

I don’t expect you to read the entire thing, unless you don’t trust my ability to interpret it for you. I just want to focus on some highlights, some things that I try, like most of us, to ignore as I go through my own daily trials and tribulations. The most important message of this article is the study’s projection of societal cost-savings by using a more comprehensive method of diagnosis, up-front as it were, to screen a greater percentage of babies with Down Syndrome. I take you now to the flowcharts embedded in the article. The bottom of the chart, for either the US or UK is the kick in the stomach. In both countries, when genetically counseled when other indicators warrant it, 70% of pregnant women choose to have an amniocentesis, and 90% of them with DS children abort them. It may be selfish for me to say, but I don’t think that (beyond one’s feelings about abortion) those of you without a child with DS can fully appreciate the range of emotions that this evokes. We were participants in this process of genetic screening, and we were part of the 30% who did not choose an amnio.
For me, reading this article puts me back into the middle of those days, a laundry list of what would I have done if I know what I know now, am I really a person of character or a complete idiot? - you know, things like that. I do know that part of our decision was a function of denial. I do know that we were pressed by several different entities to have the amnio; their intent, particularly understanding this statistic now, was very clear. I do know that we had some heart-rending (at least it seemed so then, looking back now not so much) discussions about what to do, which of course got to the heart of who we are. I will always cherish the things that we discussed; Victoria is an amazing woman of insight, character, and integrity that transcends that of anyone that I have ever met, and I’ve met some spiritual giants. For us, it came down to a matter of avoiding a procedure with risk that would achieve a result that ultimately would not change the outcome. I remember, after we had turned down the amnio, conducted a “Level II” ultrasound where the Doctor’s final words were (and yes, we were hanging on every word) “I think your baby is going to be just fine”, the subject was never brought up again by our OB Doc. We had essentially refused the course recommended to us. “They” were done.
Lodged within this cost-analysis is this paragraph:

"The following cost assumptions were made using American standards: ultrasound examination $200, maternal serum screening testing $70, genetic counseling session $100, CVS or amniocentesis package $1200 (including the ultrasound guidance before and during the procedure, the invasive procedure, and the laboratory fee for karyotype determination), first-trimester abortion $1000, second-trimester abortion $2000, and approximate lifetime cost of each live-born infant with Down syndrome $500,000. This lifetime cost of live-born infants with Down syndrome is an incremental cost (costs above and beyond those generally occurring for the average newborn). This cost includes direct (medical, developmental, and special education) as well as indirect costs (lost productivity including wages due to early death or disability), and it assumes replacement with a subsequent normal child for both strategies."

And they say you can’t put a price on Love. A price on the value of a Human life that, heretofore, hasn’t had a chance to contribute, to contribute in ways that clinicians can’t quantify. All Trisomy 21 people are not alike – just like you and me. How dare we deny well over half of these people the right and opportunity to live, love, and make the contribution that I see them make, all around the world, every day?
Apply the above formula to yourself, your friends, your family members who have had some sort of disabling physical or mental illness? Should we just sanction lethal injection for any of us that hits a half-mil in healthcare? Line ‘em up, we need to save this money for space travel and advancing the cause of Mankind.
I can get behind indoor plumbing. I’m glad we have Velcro. I’m all for Side-curtain airbags and self-parking cars. This is a narrowly-focused article, I know, with a point to be made. My problem is with the underlying assumptions and medical culture that, to me, goes over the line demarking diversity from disease. We - you, me - continue to deny the implications of the pandora’s box we’ve already popped the lid on.
Driving home, yesterday, I listened to the Director of “Evan Almighty” describing their efforts to be a “zero emissions” movie, from recycling to the purchasing of ‘carbon credits’ – paying for trees to be planted, somewhere, to offset the pollution that the making of the movie created. How about some abortion ‘life credits’ for lives taken selfishly, for those conscripts on the front lines of science who have no voice, no choice in determining their future?
After calming down, a little, I do want to note that this paper is seven years old. I hope that it is not aging well, and that there are other voices that are stronger now pointing out the benefits of genetic and social diversity that ‘offset’ these costs to us as a species. In a world of Humvees, pet insurance, and Paris Hilton, it doesn’t seem to be too much to ask.