Trisomy 18 (Edwards Syndrome) Support Group
Trisomy 18 or Edwards Syndrome is a genetic disorder. Edwards Syndrome can result in characteristic physical abnormalities and significant developmental delays. For this reason a full-term Edwards syndrome baby may exhibit the breathing and feeding difficulties of a premature baby.
My husband and I lost our first child to Trisomy 18 complications on March 5th 2013. We found out we were having a girl and that she was dying at the same time. The first Ultrasound was on Valentine's Day and even though the doctors saw cysts on her brain and deformities in her head and body, they said nothing. We were told that they didn't get enough pictures so they wanted us to come back in a week or two for another Ultrasound with a better machine. We found out accident that our baby had some problems by a nurse via phone when I called about a cold I had a day before the 2nd Ultrasound. She asked me over the phone, the day before the 2nd ultrasound if we had any questions about the cysts that had been found on baby's brain? Imagine our surprise and shock. Then we went in for the ultrasound and then found out about Trisomy 18 and that she was dying. one and a half weeks later, she died. We were told that her head was shaped like a strawberry and that her legs weren't growing and that her hands were so severely deformed that she couldn't open or close her fists. We named her Bella Jean. Sometimes I wake up during the night and swear I can feel her kicking me. Her due date is next week on July 9th. I thought I was done crying, but now, writing this down, there are still more tears somehow. When does the pain stop? We know she's in Heaven, playing and happy, but we still miss her. When does the pain stop?
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
I was so surprised to hear there was actually a group for Tri-18. All I can say is I wish it could be different and I understand completely. My second child, our first boy, was diagnosed at his first sonogram and gone a month later on our request, that was twenty years ago. I had a miscarriage after and then two beautiful boys after, my first was a girl. I don't know if it's because I terminated or because it was so sad and I lost a child, but I did still hurt from it. I wonder if he would of been fine, or if it would of been worst if he was born then died or lived a few months then died. I thought of every possible scenario and drove myself crazy. I went into therapy 15 years later, cried a lot and then was told to write the baby a letter on how much I loved him, that I was sorry and that I really hurt for my decision and then I stopped seeing her because all I did was cry when I saw this therapist. Well I finally did write the letter and It actually did make me feel better.
Do something to make peace with your baby daughter, because from my experience, time doesn't heal all wounds.