After my doctor was satisfied at the image of my daughter’s heart he went back up to her face. We didn’t get a good look at 20 weeks because we thought we could only see the back of her head. He went over her again and again. Something wasn’t right. Her face was flat, there were no features like a little nose or the outline of lips, just flat. After what seemed like an eternity my doctor finally spoke. “I’m not finding a nasal bone, you should go to maternal fetal medicine within a week or two to get it checked out. Don’t worry too much, everything else looks good.” The room spun around me, I knew something was wrong. I insisted on being seen immediately. I was 25 weeks pregnant, I could not delay things even more.
I called my husband and told him to meet me as soon as he could. An hour or so later I was alone at maternal fetal medicine having the anatomy scan redone. It was taking too long, I couldn’t watch. I closed my eyes and cried on the table. My husband came in as the sonographer was finishing up. We held each other in disbelief. After a few minutes the doctor came in. She had a list of anomalies that my daughter had. My little girl had a cleft down the center of her face, no nose, a cyst in the back of her brain, a club foot, and the vessels around her heart were missaligned. My regular OB/GYN had missed all of it. They didn’t know what it was but it was something genetic. They couldn’t give us an estimate of if and how long she would live, or how much her intelligence would be affected, or what kind of quality of life she would have. They did an amniocentesis and we went home heartbroken.
My husband and I had discussed what we would do in this situation when we had out first child, but we never thought we would have to act on it. We knew we would have to terminate the pregnancy. We loved our baby so much but we could not risk bringing her into this world to suffer. We also couldn’t do this to our two living children. What kind of life would they have if my husband and I had to devote all of our time to their sick sister? We would be constantly in and out of hospitals and we would probably need at home care for her. What would it be like for them to see her suffer and maybe die? What would happen to my daughter when my we were gone? Who would take care of her? How would we even be able to afford all that care? We scheduled the procedure at one of the 2 clinics in the United States that will do abortions as far along as I was, I would have it in about 2 weeks, when I was 27 weeks. along. It would be a 3 day procedure.
As much as it was a heartbreaking experience, the staff at the clinic made it as positive as it could be. They were kind and compassionate to both me and my baby. Contrary to the violent images of pro-life activists, my daughter was not ripped from my womb or killed as she was being born. We received a shot that stopped her heart on the first day of the procedure, I was dilated with laminaria for 2 days, and induced on the third day. I gave birth to her like I did my two living children, except this time there was silence. We got to see her, get her footprints, tell her we love her, and kiss her goodbye. Upon seeing her, it was clear she was not meant for this world.
It was the hardest thing I have ever had to do. We love our daughter and wanted her so bad, but terrible things can happen during fetal development. After normal results on my amniocentesis and extensive genetic testing we found out my daughter had a very rare condition called acromelic frontonasal dysostosis. There are 18 previous cases in scientific literature. Her condition would have cause severe mental and physical disability and would have required multiple complicated surgeries to reconstruct her face and upper airways. Several of the children have died very young. This was not a life I would wish upon my baby or our family. We were so lucky we live in a state that allows late term abortions and that the clinic was about 20 minutes away. I cannot imagine having to deal with this heartbreak and then having to plan travel, hotel stays, and childcare on top of it. I will forever be thankful for my right to make this choice for myself, my child, and my family, and I will always advocate for other women and families to be able to do the same.