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Anyone have stories or experiences with trisomy 13?

The panorama testing showed high risk for trisomy 13 and ultrasound show soft indicators such as defects on the brain, heart defects and bright organs. I'm very scared! Any related stories to share would be welcome. My doc gave us no hope.
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She was my first successful pregnancy via IVF. I had no clue because I wasn’t to the point where we could see her internally. Her heart just stopped beating and I had to go into the hospital.  Tissue sent to the lab determined she was a tri 13 baby
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That is so hard. We had a miscarriage at 12 1/2 wks last summer but I chose not to send tissue to the lab for testing but I always wondered and wonder even more now.
Miscarriages are more common then you think. I wouldn’t dwell on your decision not to send tissue to the lab. I lost two babies and had a few chemical pregnancies. We had genetic testing done on our embryos and I had to be on meds so I could carry a pregnancy. I think I was a real challenge for my doctor. I also had to have a few surgeries to correct my congenital abnormalities. I hope things work out ok for you.  Please keep the faith!
Avatar universal
I am sorry to hear about your results of the labs and ultrasound. I personally lost my baby just into the second trimester  and she had tri 13. I know someone who had soft markers in the heart and concerning labs who had a normal baby girl. I would ask to see a perinatologist. If you’ve already done that I would ask for a second opinion to see what another perinatologist says. Those doctors specialize in taking care of baby’s in utero.
I hope everything works out ok.
Big hugs!
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Sorry to hear of your loss. How did you know she had tri 13? Was it before or after losing her. I cannot imagine the pain and heavy heart that you have. Please tell me your story if you would share. I went to a maternal fetal medicine doc, I will ck into perinatologist. thank you
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