[tri-med] Re: Our baby

----- Original Message ----- 
From: "Samantha Stanley"
>  I (and my husband) are just wondering if there is anyone out there whose 
> baby had the same symptoms, and what happened.

Hi Samantha,
We chatted briefly yesterday and I am glad that you worked out how to send a 
message.
Its really hard to find any two of our children who have exactly the same 
set of problems, all of them are so unique.
The list of problems that you have certainly do sound like your precious 
little one does have Trisomy 18, however not all the problems that he/she 
has are life threatening. In fact from the list that you have at the moment 
there are only two that are cause for concern - the VSD and the 
diaphragmatic hernia.

The others, the two vessel cord, clenched hand, club foot and cysts (choroid 
plexus cysts) are mainly cosmetic and not life threatening. (the cysts have 
probably already resolved)

I don't have any first hand experience with major cardiac problems or CDH. 
My son only had mild herniation into the chest and that was repaired when he 
was 14 months old. A friends son was diagnosed with CDH and they were given 
the worst possible scenario before birth, including the fact that he might 
have T-18 (he didn't). His parents decided to continue on with the 
pregnancy. When he was born the CDH wasn't as bad as they thought and was 
repaired immediately after birth, very successfully. Evan was tube fed for a 
number of years but he is now 8 years old and doing just fine.

There are a number of families on the list that have dealt with VSD's though 
and I am sure that they will share their experiences.

I wish that I could be more help, but I hope that it some small way it helps 
to know we are here and hope we can help you as you join us in the trisomy 
funpark - watch that roller coaster its a doozy.

Life consists not in holding good cards but in playing those you hold well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (11 years, T-18 Mosaic)
http://members.optushome.com.au/karens

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

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