[tri-med] Re: New to list-please help

----- Original Message ----- 
From: "lisa potash" <lpotash@xxxxxxxxxxx>
We just found out at 17 ½ weeks that our baby is positive after cvs and
> amnio for trisomy 13 mosaic.

Hi and welcome Lisa! Glad you've found us but sorry that you had a reason to 
do so.

 The doctors there and genetic counselors/ob's-pretty much
> everyone we have talked to encourages termination.  I haven't found 
> anything
> on the web either that is helping to make our decision to proceed.

That's pretty much the medical standard. Most of the medical profession has 
no idea that some of these kids to survive AND thrive. The medical 
information available to them is not up to date or totally accurate.
However, most of the time they are right on the mark unfortunately. The 
children who do survive are the exception to the rule.

> The mosaic part makes it even harder since they say it masks
> the issues and sometimes prolongs them.

I too am the parent of a 'mosaicer'.  :0)
Truth be told, the mosaic portion of the diagnosis makes it even HARDER for 
anyone to know just what the story will be.
Masks the issues????????  Not sure just what that means.

With a mosaic trisomy it all depends on how many abnormal cells make up any 
system, organ or area of the body. There may be a low concerntration in the 
brain and a high one in the skin.....or ANY other variation on that theme.

Also, there are some 'full' triers who do better than 'mosaicers'. You just 
never know.
And often you don't know the full details until birth.

As of today, I don't feel it is
> fair to try to have this baby born to just have it suffer and pass away so
> quickly. I am also afraid what effect that will have on the rest of our
> family.

We didn't have a prenatal diagnosis so I haven't been in your shoes in that 
area.

When that trisomy diagnosis first comes down it seems as if the world has 
just tilted off base and is running you over. It's the 'shock and awe' 
portion of the program that hits you in the head and the heart.

You are doing the right thing by gathering information.
Next step is to discuss with your hubby how you both feel.
If it helps, make a list of pros and cons.
Then decided what is the best decision for YOU and your family. Follow your 
gut instinct.

>They tell us that mental retardation is almost a definite so it
> doesn't sound like the baby would even know it was here.

Maybe. Maybe NOT. Again, until the baby is here and the full extent of 
issues/complications is known nobody can say for sure.

I know of people who's mosaic trier didn't make it to term and had a still 
birth.
I know of people who while preg with a mosaic trier were told what you are 
saying (and urged to terminate) and their child was born pretty much 
'normal'.
And there is everything in between.

What I'm saying is, NOBODY and I mean nobody, can say for certain just what 
the situation will be.

Follow your heart.
Michelle mom to Alex (19, partial trisomy 14 mosaic) and Molly (15)
MichiganUSA



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

Other related posts: