Senate Bill 1810

(To those of you who read my carepage - much of this is similar to what I posted there except I can be more wordy here!)

This post is not specifically about Peter - but about an issue that has me very upset that I need to share. I know this is rhetorical but...after spending the last year or so reading about Peter - how many of you would say he was a mistake? something to be feared? something to be avoided? someone that by the sheer fact of having an extra chromosone lacks dignity? how many of you think Peter is disposable? a burden? something to be eliminated as there are no longer institutions to shove him in? If you have never before encountered a person with Down syndrome - I hope that through this blog you have been exposed to the beauty, wonder and challenge that Peter is - no different than any other child. But let's be honest - many of us didn't grow up with this exposure. We didn't really know what DS is and what it means to a family. Will the child be deformed? will they ever be able to self feed? will they walk? will they always sit in a corner grunting and slobbering? There is very little I could have told you about DS until we found out Peter had an extra chromosone - one little tiny difference in the structure of his body that makes him different. We read, we reached out to other families and we became advocates for our son before he entered this world. Why? Because we firmly believe in the dignity and value of every human life - EVERY HUMAN LIFE! And I am not here trying to debate abortion - but would be glad to if you wish to take that on - I am here to talk about an alarming statistic that speaks to a lack of education, understanding and support to prospective parents.

In the US today 85-95% of parents who receive a prenatal diagnosis of DS will abort the baby. In Europe the numbers are higher, and believed that in the UK it is almost 100%. As many of you parents out there know - the comprehensive screening for "birth defects" generally is given after a woman turns 35. However, the American College of Obstetrician and Gynecologists (ACOG) is pushing to have ALL pregnant women tested - and specifically tested for DS. It doesn't take a rocket scientist to read between the lines - the goal being to further reduce the live births of babies with DS. Dr. Brian Skotko (http://www.brianskotko.com/) wrote a letter to the medical journal that published this initiative requesting that if the testing was extended to all pregnant women - that the initiative include training and education of providers on how to deliver the message and provide accurate/updated medical information so that parents can make better informed decisions. His letter was never published....

This year a group of bi-partisan leaders proposed SB1810 - initiated by Senators Kennedy and Brownback. This SB was aimed at providing accurate and comprehensive information to parents who receive a diagnosis of a disability for their child prenatally or after birth. This was not intended to push the abortion issue one way or another - but strictly to provide information to parents so that informed decisions could be made and support services provided. The SB died this week.

From experience I know what it is like to be one of those parents - scared, confused and looking for someone in the medical community to put it all in perspective. My OB didn't know what to tell me after the amnio - her uncomfortableness was palatable - followed by a "what are you going to do?". The doctors at the hospital followed up with a "we can schedule your abortion today". Only my pediatrician - whom if not for me would not have known the diagnosis - talked to me about what it meant, the challenges and the potential. If this was my first pregnancy, had I been younger, less firm in my beliefs and just as scared I can guarantee you there would never have been a carepage (http://www.carepages.com/ page: PeterAlistairKrause) or blogspot to read about Peter. I would have followed the lead of people that lack in education on this subject and ended Peter's life.

I am begging you to take the time to just sit and think about what this means. Please think about what this means to other little Peter's yet to come into this world. And take action! Let's ensure doctors and parents get support - let's get rid of outdated information, let's get accurate information in the hands of these people. Let's ensure OB/GYN's are trained on how to deliver the message of of prenatal diagnosis. Whether you are pro-life or not, I am begging you to get involved and ensure that information is out there - that is all.

Stretch your imagination with me for a second - think of the challenges you might have encountered in your lives - illness, broken bones, allergies, asthma, etc? Now imagine your parent had been told during pregnancy "your child is a boy - he has a 3% chance at austism, a 80% chance of having allergies, a 70% chance of being diabetic and a 35% chance of having cancer in his life, he will have 8 broken bones and will never be smart enough to ace Algebra"....do you think you would be here today? And where do we go from here? look at the advances we have made in medicine in the last 100 years. The advances will be exponential from here forward. So look 100 years into the future - we could be foretelling an individual's health assessment before they were even born. What will we do with that information if we don't understand it?

All I am asking today is that we ensure that as medicine advances so does the understanding of what is being reported. That as we empower our doctors to deliver diagnosis, they also be able to support and inform patients. I expect that from my doctors now - why shouldn't we expect that?!

I thank you for taking the time to read through my random thoughts as I honestly try to put my emotions together on a subject that is near and dear to my heart. As I find out more ways to get involved in advancing education and support services I will let you know. And please, if you already have some of this information, please post it here as a comment so that we can spread the word.

Love!
catherine