| |
 My
name is Tonya Byrnes and my daughter is Jessie Kristine Byrnes. I had a very
hard pregnancy. I tested positive for downs syndrome(1 in 10 chance), but
upon further tests found out that she was fine. I never did get very big and
my doctor just said I had a smaller baby, but he didn't realize how small.
I went into labor and started bleeding at 36 weeks. Labor was stopped, but
then the following week started again. A relief Doctor was in and decided to
do an ultrasound as she had never seen me and wanted to know what she was
dealing with before she did the c-section. Thank goodness she did. She
probably saved Jessie's life as she found out she was too small. Jessie had
a 3 minute d-cell so they decided to life flight me out to the nearest
hospital with a NICU, Rouge Valley Medical Center in Medford, Oregon. This
is where Jessie was born via emergency c-section at 12:19am on Dec 21,2007.
She was only 3lbs 10 ozs and 17 inches long. She stayed for 3 weeks. It was
during that time that we learned a large number of things about her. Her
heart murmur turned out to be a small ASD and a very large VSD. She has
agenesis of the corpus colosseum and her hypothalamus grew together in the
back section where the colosseum is missing. The doctor's tested her for a
syndrome, didn't think she had it, but tested anyway. She didn't have it,
but they were stunned to find that she has Mosaic Trisomy 13. This was
diagnosed when she was approx 4-5 weeks old.
Jessie had to have open heart surgery on March 11, 2008 at only 11 weeks
old. She had a very hard time in recovering at first. The first 4 days were
very critical, her body was shutting down, once it finally "woke-up" she
bounced back quickly. She's such an amazing fighter !! At the time of the
surgery. We had a biopsy done of her heart tissue. We just got the results
back and are once again shocked at the results. They found that she has a
Trisomy 16 in the heart muscle. Our cardiologist thinks it's a typo and is
following up to disprove it. Time will tell.
Jessie had
IUGR. I was 37 weeks when I delivered, but she was only at a 31.5 weeks
size. The Dr. caught it at a 17 week ultrasound, but said that I must be
wrong on my date of conception. I told him I used a digital monitor and knew
the exact day, but again, I was dismissed. That bothered me through the
whole pregnancy so when this all happened I actually wasn't as surprised as
I could have been.
Currently she is doing pretty well and just turned 5 months old. Her VSD was
a 7mm hole, it's now a 3mm hole. Her aortic arch has opened some, hopefully
it will open more by the next echo. Our biggest concern with her is that we
can't put weight on her. I would really like to know if any other parents
are having this problem or others. I would love to talk to anyone who has
info or wants info..
Tonya
My email address is jtbrnz@yahoo.com
|
|
Ironman
for Kids - The Living with Trisomy 13 Community thanks Michael
Hennessey for helping to raise awareness for Trisomy 13 and other
related disorders. 
to help update the medical literature and to improve the quality and
availability of medical care. Tracking Rare
Incidence Syndromes (TRIS)
Translation