AnnaBelle

This is the story of our daughter, Anna Belle, whom we chose to release to God before she was born due to complications of Down's Syndrome on October 17, 2000.

We waited 6 1/2 years to try to start a family. When we were finally ready, we tried for 3 months and were thrilled in early July when we learned we were pregnant. It was like a dream come true to finally be expanding our family of 2. We went to the Dr. and learned our due date was March 13, 2001. A spring baby!! The first trimester progressed very smoothly. I did not experience much morning sickness and we saw and heard the heartbeat right on schedule. Nothing could be better.

At 16 weeks I went in for my regular checkup and they drew blood for the Alpha-Feta-Protein test that screens for neural tube defects and chromosome problems, in particular Down's Syndrome. I had no worries and happily gave my blood. They told me no news is good news. Unfortunately, we got news. On October 4, my Ob called to say my AFP results came back with a high risk of Downs. She wanted me to do an amniocentisis to analyze the baby's chromosomes and determine if something was really wrong, or the screening test was a false positive. This was very difficult news to hear. This was my first pregnancy for goodness sake! I'm 28, so there's no way I could have a baby that has Downs. That's for older mothers! Plus, the AFP test has a huge false positive rate, so I was sure it was just a false positive for me.

The following Friday, October 6, I went for the amnio. Before my Ob did the amnio, the ultrasound tech did a 1/2 hour ultrasound to look for the soft markers for Downs: thick fold at the back of the neck, reduced number of digits on the pinkie, heart misfunction, and so on. Though the ultrasound tech could not get a good picture of the heart because our little girl had her back to us, none of the other markers were there. We felt so relieved. We loved seeing our baby roll around and wave at us. Then my Ob came in and performed the amnio...painful but tolerable. My Ob asked us when he called us with good news the next week whether we wanted to know the sex. With his upbeat attitude, we were thrilled. We said, "Yes, we just have to know!!"

So, the next week was a difficult wait, but we were just sure that it was going to be OK. No markers on the ultrasound was such a good sign. Little did we know then that half of Downs babies show any markers at 17 weeks. On October 13, 2000 Jose received the fateful call from my Ob. Our baby had Downs...a rare form called translocation. When Jose called me to tell me, I thought I was going to die. I just couldn't believe it and cried uncontrollably at work. I left work immediately and we went that day to see a genetic counselor.

The genetics counselor explained to us what the translocation meant. I knew Down's Syndrome meant an extra 21st chromosome. The translocation meant that the extra chromosome was attached to another pair of chromosomes, in Anna Belle's case the 14th pair. It was also in every cell of her body. Also, unlike regualr Trisomy 21 (Downs), Jose or I could be the carrier of the translocation chromosome (we later learned we are not). The milder cases of Downs are when not every cell is affected (like Corky, the boy on the TV show with Downs). Well, Anna Belle had it in every cell. In addition, there was no way to know what else was affected by the fact that the extra 21 was attached to pair 14. It could mean nothing, or it could mean severity of her condition. I then asked what I never expected to ask, "If we do not want to continue this pregnancy, how long do we have to decide?" I learned in NY state that a woman can have an abortion up to 24 weeks. I was 18 weeks. The genetics counselor also told us we were having a girl.

Jose and I went home crying and scared. We had already decided that if something was wrong, we would terminate the pregnancy. I refused to bring a child into this world with no chance of a normal life. I have known Downs children who have a mild case and do relatively well. I have also known Downs children who have been horribly ill and suffered greatly. I did not want Anna Belle to face this. Though there are milder cases of Downs out there, they are the minority and I just could not play Russian Roulette with her life. Also, what would happen with Anna Belle if something happened to Jose and I? We could handle taking care of a special needs child, but when we are gone, who will do it then? We researched lots of places, Internet, doctor friends, and family. It was horribly agonizing, but we felt the best thing for Anna Belle was to release her to God before she suffered.

I went into the hospital on October 17, 2000 a D&E (dialation and extraction) procedure. While I waited in pre-operation preparation, I believe God sent me a sign that we were doing what was right for Anna Belle. Right next to me in pre-op was a teenage girl with Downs. She was in such agony and pain, yelling and moaning. In order to do any tests on her, the doctors had to sedate her. She was in the hosiptal for one of many surgeries to help her quality of life with the Downs. She was yelling for her parents who were right there with her. I could hear her pain and suffering, her parents exasperation, and her doctor's frustration with not being able to do much for her. By their conversations, I could tell her life was so hard. I do believe that God arranged this "coincidence" so that I would know I was sparing my child from that life.

I was under general anestesia for the procedure. The last thing I remember before going under is telling Anna Belle good-bye, that I loved her and that I would be with her again one day. The procedure took about 20 minutes and as I awoke from the anestesia, I was in curiously little physical pain. But emotionally, I was dying inside.

Fortunately, shortly after the abortion, I found a website called "A Heart Breaking Choice" for parents who have terminated their pregnancies due to a poor prenatal diagnosis. Unfortunately, but fortunately, I was definitely not alone out there. Others have gone through our experience and have helped us grieve. We know the pain will never go away. But we are learning to live with the pain and loss. We have burdened ourselves with the emotional pain so our daughter will feel no physical pain. We love and miss her so much. She will ALWAYS be our first child. If we are blessed with healthy children, they will know they have an older sister in Heaven. I hope she's smiling down on us and playing with all the little dachshunds up there.