[tri-med] Re: Andrew Denton

Michelle, I was the same way when we started on the Trisomy Path with =
Nick.
Not only did I throw up after the neonate told us we needed a cardio
consult, I threw up blood and scared my nurse to death.

Like Susan, I thought "FLK" when I saw Nick for the first time.  Because
Nick's chin was so recessed, the first thought I had was "Oh my God, we =
are
really gonna need braces".  Our neo-nate and geneticist used the term
"dysmorphic" to describe Nick's features.  To be honest, I prefer FLK!  =
The
grandparents were really offended by "dysmorphic".  To me, the issue of
whether Nick looked different than other babies was totally separate =
from
the issue of whether or not he was beautiful.  No one is going to =
dispute
that this kid is gorgeous, especially when he smiles.

Steph in Dallas
Mom to Nicky, 2 years old, partial T-18 =20


----- 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



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

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