Jessica's Story

The Diagnosis

September 2001 - Everyone remembers that month. For us it had additional meaning. Mike and I had been trying to conceive for two years and it seemed as though we would not be able to have a child. We had just had a conversation that it was time to give up and make a permanent change. I was turning 38 that month and was afraid of getting too old. But as we mourned with the nation of the attacks of September 11, I was silently hoping for a new life to begin. One week later it was confirmed. We were going to have a baby. How incredible it seemed to us.

We decided not to tell anyone
except our parents for awhile because I had a miscarriage before and I wanted to be sure everything was alright. The kids would be the first to know. Nicole was thirteen and Jake was nine. What a change for their lives this would be. They were so excited when we told them. I had shirts made up that said "Big Sister, again" and "Big Brother" It took them a few minutes to figure it out but when they did they couldn't contain themselves.

At ten weeks I went for my first Doctor appointment. We had an ultrasound and everything looked good. The baby was due May 21, 2002.

In December I had to have an AFP test. This test screens for birth defects including Downs Syndrome and other chromosome abnormalities. I received a telephone call about a week after from the doctor's office. They wanted me to go to Peoria to have a level 2 ultrasound because the AFP test came back with a higher than normal chance for downs syndrome. It had come back with a 1 in 130 chance. The normal for my age is 1 in 128, so they said not to worry too much this was just routine. Once you hit thirty-five the chances increase dramatically. On December 28 we received a sharp blow to our stomachs - we were prepared for the possibility that our child might have downs syndrome, but we in no way were prepared for the blow that we were about to receive.

The ultrasound revealed that there was some severe birth defects. The heart was on the wrong side, there was fluid in the brain and the cord only had two vessels instead of three. The doctor talked us into having an amniocenteses to determine if this baby had a chromosome problem. The results would be back within three to five working days. We still had hope that it might only be downs syndrome or possibly something that would cure itself. We couldn't have been more wrong.

On January 3 I received a call from my doctor's office that they wanted to see me that day. I knew this would not be good news or they would have told me on the phone. Mike and I were told that our baby "girl" had Trisomy 18. A rare chromosome disorder that would only leave us with a fifty percent chance of delivering her alive. Of the fifty percent that survive, ninety percent die by the age of one. That was the worst day of my life. To be continued.....

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