In a message dated 07/25/2002 6:08:45 AM Pacific Daylight Time,
bh54901@xxxxxxxxxx writes:
> Has anyone had a
> baby with these problems that they we're able to correct with surgery?
> We are just beginning to find out about T-13 and realize there are so
> many different variations.
>
Hi LouAnn,
My daughter Emily is T13 Mosaic and is now 6 years old. We did not have this
diagnosis prenately, however Emily did have ASD, VSD, and PDA. When the docs
first discovered the holes they felt she could wait until about 2-3 years old
before needing surgery. Unfortunately she was born premature and had several
complications one of which was dependency on the ventilator. She had
congestive heart failure and at 2 months old they were forced to do emergency
open heart. She was very unstable at that time and only weighed 4 lbs.
Fortunately the surgery was a complete success and about 2 months later she
came off the vent. She needed oxygen until she was one and we had several
follow-up visits including EKG and Echo's. After the surgery they did
discover a small leak which they felt were stitches that had come undone due
to poor tissue, but it has since closed on it's own and we are only seeing
the cardiologist every 2 years now.
As for kidneys... she does have bladder reflux which is where the urine
backups into the ureters and goes into the kidneys. They dx this at 5 months
of age. She has had a VCUG test initially every 6 months and now every 18
months. She has been on antibiotics everyday since they diagnosed. Her most
recent VCUG still shows significant relux and they want to operate. I am
dragging my feet, so they said I have until she is 7 and then it's not an
option.
Hope this helps!!!
Jennifer - Mom to Emily (6, w/ T13 Mosaic) , Hannah (3) and 2 angels ^i^ ^i^
Michigan, USA
Building ___ooOOoo__ Rainbows
www.trisomyonline.org
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