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I Carried My Terminally Ill Baby So She Could Save Others

We almost didn't get the news. At 19-weeks pregnant with our third child, I went with my husband, Robert, to Oklahoma University Hospital for an anatomy scan. It's a very busy prenatal facility, and the sign in the waiting room kept changing: 10 minutes behind, then 20. After an hour, we talked about leaving. We weren't going to find out the gender, this pregnancy had been easy and our other babies were both completely healthy, so the whole scan felt like a waste of time. Just as we were about to go home, they called our names.

As the technician did the scan, Robert and I admired the little fingers and toes and tried not to cheat and find…

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 I Carried My Terminally Ill Baby So She Could Save Others

Annie Ahern became the first infant organ donor in Oklahoma — and showed how there can be incredible beauty in the middle of tragedy.

Anencephaly Net

Anencephaly Net was created by Steve and Patricia Karg in loving memory of their daughter, Mary Elizabeth.

I'm Monika Jaquier. I founded the pages in November 2000 after the death of our daughter Anouk. I tried to make a website as I would have wanted to find after her diagnosis: a place that provides information about anencephaly, shares stories and pictures of families who have been there, gives practical advice based on their experiences, and contains links to other helpful and supportive places.

Baby Jack's Story

We're expecting our 3rd child in July. We had an ultrasound preformed at 28 weeks and discovered he has anencephaly, a fatal birth defect. Here's our story and experiences...


Anencephaly is a serious birth defect in which a baby is born without parts of the brain and skull. It is a type of neural tube defect (NTD). As the neural tube forms and closes, it helps form the baby’s brain and skull (upper part of the neural tube), spinal cord, and back bones (lower part of the neural tube). Anencephaly happens if the upper part of the neural tube does not close all the way


Anencephaly is a defect in the closure of the neural tube during fetal development. The neural tube is a narrow channel that folds and closes between the 3rd and 4th weeks of pregnancy to form the brain and spinal cord of the embryo

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