Ella, My Only Girl

Posted on Posted in Hypoplastic Left Heart Syndrome, Neural Tube Defects, Spina Bifida, Trisomy 13 (Patau syndrome)

by D. L.

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I now have four boys that I love to pieces, but a daughter I think of every day and wish I had in my life.

I had just turned 35 and had decided that I wanted another baby. I had three beautiful boys, and had a feeling that if I got pregnant again I would have my little girl. I always wanted a girl. Don’t get me wrong I adore my boys, but I still really wanted a girl. My husband and I argued a lot about the subject because he was done with having kids. We did keep trying though. It didn’t take long and I was pregnant. I was very happy.

This was the first pregnancy I really planned. I felt great. I had horrible nausea with the other pregnancies, but not this one. My obsetrician suggested extra testing because I had just turned 35. I agreed thinking nothing could be wrong. We waited three months to tell our family at Thanksgiving. Four days l got the call that the blood work showed there might be a problem. I had to get a CVS test.

I was at work when they called to tell me our daughter had Trisomy 13. What? I had no idea what that meant. The maternal fetal medicine (MFM) specialist just said  “terminate the pregnancy.” I sobbed for days. I couldn’t do that.

We went to another MFM and he agreed to wait to the 17 week mark to do an amnio. I have never cried more in my life, everyday, all day. At 17 weeks we went in. He first did an ultrasound. My little girl had multiple anomolies. She had spina bifida so severe that her frontal lobe was not developing from the pulling, her heart wasn’t developing chambers and the left side was three times smaller than it should be. Her heart rate had already started to slow down. Her face was deformed and it seemed like she was trying to cover it in the ultrasound. I was told she would not survive.

I didn’t want to have a D&E. Even though I had three c-sections, my OB agreed to deliver her. I figured if my uterus ruptured then so be it. Two days later I was in labor for 12 hours with my daughter. She was born December 21, 2012…and on that day that part of me died too. I wish I could tell you it gets easy but not a day goes by that I don’t have regrets. I now have four boys that I love to pieces, but a daughter I think of every day and wish I had in my life.

One day I will see her again. I just pray she understands why I did what I did. Every year we celebrate her birthday, but it will always be bittersweet.

Happy third birthday Ella. I love you more than you could ever know.