The Harnisch Family

The Harnisch Family

Apr 29, 2011

Omaha Down Syndrome Symposium for the medical community

While most woke up early to watch the events leading up to and following the Royal Nuptials of Prince William and Kate (but no worries I DVR'd some of it)...I had the distinct pleasure of participating on a panel regarding Down Syndrome in front of several physician's and nurses from our area.  It took place at Methodist Women's Hospital.
Photo courtesy of HDR Architecture, Inc.; © 2010 Ari Burling
The Down Syndrome Alliance of the Midlands organized the event and brought all of these medical professionals together for a conference.  The purpose is to simply educate, inform and arm them with a plethora of information and resources to better prepare them in the event they are exposed to a family who has learned that Down Syndrome is, or will soon be, present in their lives. The fact that they are more aware, knowledgeable, comfortable and confident will certainly make the families experience a little easier and more comforting.  As you can imagine, there certainly are some horrible stories out there.  The goal is to make the "sharing and immediate handling of the diagnosis" go smoother and less awkward for everyone involved.  What a great step in the right direction!
There were three of us who made up the "panel".  Both Carrie (who has 13 month old Kinley) and Julie (5 month old Carson was there with us today and boy was he hamming it up for his audience :-) received a prenatal diagnosis.  They shared their experiences.  Both of which were very interesting and emotional.  The medical professionals in the room were captive, genuinely intrigued and had very good questions for each of them.

here are some phone pics I took of Carson.
It was nice having him sitting on the "panel" with us...he provided a bit of comic relief and helped break up some of the tension.

Next it was my turn to share our "Little Miss Macy" experience - as we received the news of her diagnosis postpartum.  When I was finished telling our story, there was good dialogue and lots more good questions.  I was impressed and uplifted by them all.

I was initially going to go into this morning's discussion without notes, just winging it.  As Roberta told us it could be a casual, share your story and Q&A type arrangement.  We each sent in photos and there was a slideshow playing behind us...But this morning I arose from bed early and had a flood of memories rush into my head.  The best way for me to revisit the evening of Macy's birth was to sit in front of the computer and just start typing.  So that's what I did.  I shared pretty much the whole story.  :-)
Prior to beginning I put out a disclaimer.  I warned the group that I may tear up a bit, but no worries, it's no big deal.  I am just an emotional person and the water-works flow easily for me.  I could see that many of them had already been tearing up as they listened to Carrie and Julie's stories, and I knew mine would be no different.  :-)

It was basically a revised version of Macy's birth story.  Leaving most side stories, names, etc out and tailoring it down quite a bit more for our "medical professional" audience perspective.  I left out several minute details, as they really wanted to understand what we were feeling, learn how the news was broken to us, how we interpreted it, and how we handled it, etc...

I hope that the fact we were able and willing to share our stories and feelings helps them all understand and reach out more efficiently and effectively with families going forward.  A little compassion goes a LONG way!

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