[tri-wings] Re: Is ER sending us a message?


OK, I have to come out of lurk mode for this..

Dina and Dave  - I am sorry that this has happened to you and to your baby.
T18 is a terrible genetic condition, but these babies are nothing short of
being angels on earth.  They are very special and so are their parents.
Some of you may know remember me and some may not - I have been in lurk mode
for quite awhile now, but I have to comment on the ER show and my feelings
regarding it.  My baby Mary Emily was full t-18 and we found out by amnio
around 30 weeks, but they had many suspicions up to that point, and then we
finally agreed to the amnio.  Our little angel Mary lived for 52 minutes -
so I don't know what it is like to take a T-18 baby home and have to deal
with the many problems that arise, but each and every baby and situation is
different, so you cannot compare a fictitious episode of ER to real life.
If you are an ER Fan then you know already that the more shocking and
controversial the episode - the better for them.  On a side note, my oldest
daughter Laura has just been diagnosed with Marfan's syndrome ( the episode
from 3 weeks ago -where they didn't recognize it and didn't check his x-ray
for aortic dissection and the guy died!)  I also look at THAT episode as
television drama - yes it could happen, but it is only one scenario of many.
I am not making any decisions regarding her based on the ER episodes.
.......
Laura is also scheduled for spinal fusion surgery on 2/4/02 for her
scoliosis which has progressed very bad.  Please keep her in your prayers.
 
I have been known to be blunt - that's why I tend to stay in lurk, but I
just have to say this:
I have also had 2 miscarriages.  I believe to this day that they were more
difficult to deal with than giving birth to Mary Emily, and I know that I
still have issues to get through to accept the problems I have dealing with
those two babies - one a little girl and one a little boy, because I never
ever had a chance to hold them and talk to them and share them with the
world.  Even though Mary only lived for 52 minutes she touched so many
peoples hearts and lives -We were able to hold her and love her and her
sisters and brother saw her.  When my eyes locked on her big dark eyes and
she "squeaked" her little sound that she made, then I was in such peace.
She died shortly in my arms.  Of course we can not control our bodies - when
a miscarriage occurs - it is going to happen.  Some of our T-18 babies have
been miscarried and some have been stillborn and then some like my baby die
right after birth, and then some have lived for hours, days, and even
months, some get to go home and some never do.  I guess I am just upset
about that episode and how it portrayed everything as so hopeless - I just
wonder what research they did and remember how interesting would a story
about a t-18 baby with minimal problems be????.  

I know you both will make the best decision that is right for you, but
please don't make a decision based on a TV show trying to boost its ratings
- you can't get any better information, love and support than from this
group right here.

I wish you peace and strength,
Linda
Wife to Patrick (the biggest kid in the house) Mom to Laura - 14, Caitlin
-13, Daniel - 12, Mary Emily (T18 6/29/94-6/29/94) baby noel (miscarried
12/94), Maureen-6, baby kevin (miscarried 8/95) and Francis - 4




> -----Original Message-----
> From: Dina & Dave [SMTP:db2@xxxxxxxxxx]
> Sent: Thursday, October 18, 2001 11:01 PM
> To:   tri-wings@xxxxxxxxxxxxx
> Subject:      [tri-wings] Is ER sending us a message?
> 
> Did any one watch ER tonight? Talk about timing! We are still speechless -
> When those parents abandoned that child because they were too exhausted to
> continue caring for him my heart just broke for them and the little boy. I
> dont know who was suffering more- that poor little boy - more surgeries
> than birthdays they said.  The head Dr (forgot his name) treated him as a
> science project taking photos during his surgery saying how rare a 6 year
> old Tri 18 case is!!!! I think our minds are finally made up - Thank you
> again for all of your all of your kind letters and words of support-I
> can't tell you how much you have all touched our lives 
> I will be in touch
> take care - all of you
> Dina and Dave
> NYC
> 
>                   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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