[tri-med] Re: Andrew Denton


----- Original Message -----
From: "Karen" <karens@xxxxxxxxxxxxxxxx>
> (Michelle, you would appreciate one of the codes being
> FLK)

I think that part of my "big issue" with FLK is that it really WAS the
beginning of my occupation in the trisomy fun park. Guess that's part of why
I have strong feelings about that particular phrasing. Not necessarily the
words on their own but the emotions that come with what they meant---and bad
memories.

For those not knowing my story--we had no prenatal dx of trisomy. Alex was
born at 12:33 am and had issues but nothing life threatening. Off to the
nursery, but not the "typical" nursery. I tried to sleep but couldn't so
went to be with him. Sat in a rocking chair with him, talking/singing and
crying off and on. At that moment I thought the crying was some post partum
stuff but now believe I knew that we had issues with our son and they
weren't good.

I'd gone to shower and was having breakfast when the pediatrician came in.
She started talking and her face and tone scared me. Nobody was there but me
at this point--7 hrs after Alex's birth. Said that because a nurse called
her during the night about a FLK (and she then TOLD me what the meant)
they'd ordered a chromosome analysis and we'd have the results in 6 weeks.
And thus began our trip down the trisomy path....... and it all started with
being told I had a FLK.

Additionally, calling ANYBODY'S child a "funny looking kid" is just rude.
:-)  Medical term or not.

However, I can't think of any other phrasing that would be less painful
because of what it means. The fact is that such phrasing is often a "first"
in terms of identifying issues with a newborn........a path no parent wants
to begin.

Michelle mom to Alex (15,partial trisomy 14 mosaic) and Molly (12)
MichiganUSA


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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