[tri-med] Re: trisomy 18 suspected

In a message dated 4/23/02 7:40:06 AM Eastern Daylight Time, 
hrmorgan1@xxxxxxxxxx writes:


> I am 24 weeks gestation, and we have decided to continue with the pregnancy 
> regardless

I am so sorry that you have to be here but this place is irreplacable when 
you are going through this.

I too found out that my daughter had a trisomy at 24 weeks gestation via 
amnio, but Hannah had trisomy 13.  We were told by the doctors that we should 
consider termination, that t13 was incompatible with life, etc.  But the 
ultrasounds showed a well formed little girl and we decided to continue with 
the pregnancy, no matter the outcome.

We are extremely lucky parents.  She is trisomy 13 mosaic, which means that 
not all of her cells carry the extra chromosome, and most of the time this is 
a better prognosis for the baby healthwise, but not always.  On the 
ultrasound they found an echogenic foci on her heart (calcium deposit) and a 
thickened nuchal fold, but no other defects or malformation.  

Towards the end of my pregnancy I did have some problems.  I had the opposite 
of polyhydramnios, and my fluid was low.  Also they told me that Hannah had 
stopped growing at about 35 weeks and wouldn't weigh more than 5 1/2 lbs.  
They continued to monitor me and I was induced two days before my due date.  
I had the neonatology staff waiting in the room with us as well as a chaplain 
and a pediatric cardiologist, which I learned about from this website.

Hannah was born and weighed 7 lbs. 12 oz.  She came out crying and needed a 
little oxygen right away but had apgars of 8/9 (better than my "healthy" 
son).  She went to NICU for four days for a fever, low blood sugar and not 
feeding well.  She came home without medication or machines.

Hannah had a PDA and PFO at birth which have since closed.  She also has a 
small ASD which they hope will close by age 2 but does not affect her 
whatsoever.  She is now 18 months old and walks, talks and is a very smart 
little girl.  You would never know she has t13 and she is the love of our 
lives.  I know her story is an atypical one, but wanted you to know that 
there are exceptions to the rule, as you can see from all of our stories.

Don't let the doctors talk you into doing anything you don't want to do.  And 
if you spend a few weeks on this site, you will definitely know more about 
t18 than they do.  Most docs only know what they read in their medical books 
and never bother to find survivors.  The same goes for genetic counselors - 
they really gave us very false information.

I hope this helps you.  Please email me at any time if you would like more 
info or need to chat.

Kristin - wife to Bryan, mom to 18 month old Hannah - t13 mosaic w/ 
Robertsonian translocation, and Brennan Joseph - born 3/30/02 in Atlanta, 
Georgia, USA
Come and see us at:  http://hannahclare.homestead.com/


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

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