Monday, May 25, 2009

Trisomy 18...the emotional side

The first time I'd ever heard of Trisomy 18 was 13 years, 4 months, and 3 weeks ago. I was sitting in a doctor's office in beautiful Asheville, North Carolina. It was the second week in January. I was seven months pregnant.

But let me back up a few weeks. On December 15th, 1995 I was at work at The Shoe Show smiling and saying, "Welcome to The Shoe Show!" whenever a customer would walk in the door. I was moving shoes around and noticed a cramp in my stomach. I thought walking around would make it go away. I was wrong. After an hour my manager suggested I call my doctor. They suggested I come in as soon as possible. I called Hubby but was shaking and crying so hard my manager had to take over the phone call. He grabbed Kelly and hurried down to the store while my manager helped me to the backroom to lie down. Twenty minutes later I was helped into the truck and we made the hour long trip to Asheville, from Sylva, in 45 minutes. It was the scariest 45 minutes of my life.

We went to the ER where we were met with one of the doctors from the office. He assured us that babies are born early all the time and everything would be ok. We decided to try and stop the contractions. I was given a shot and placed on a medication to help stop the contractions. I had to take it six times a day. I stayed the night and was surprised to find myself in the same room I had stayed in one year and 364 days earlier. The next day Kelly celebrated her second birthday in the room she was in two years before. I felt so bad that she was having to spend her birthday in a hospital. I was able to go home later that day and was placed on house rest which meant our trip to Florida for Christmas was canceled.

Since we hadn't been able to see the sex of the baby during the last ultrasound I asked my mom if she would give us the money for a gender scan as our Christmas present. We had this done on January 2nd. For a few short minutes we were able to relish in the joy of discovering we were having a boy. We were told his growth wasn't where it should be and my due date was moved. After speaking with the doctor it was recommended we have a Level II ultrasound done. I hadn't had any problems during my pregnancy with Kelly so this was all very frightening. We made an appointment, I drank a bunch of water, we waited in the waiting room for over an hour, left and went to our doctor's office. I peed (big relief), they sent us back and we were seen right away (that's the short version). During the ultrasound our tiny little boy was diagnosed with Dandy Walker Syndrome
. The doctor suggested I have an amniocentesis so we went ahead and did it right then. There is a one in 200 chance for a miscarriage during an amnio but this is usually when the procedure is done earlier in the pregnancy. Because my body was already in contraction mode this sent me into labor again. We went straight to the ER, got another shot and I was sent home to rest.

Then the waiting began. During the two weeks of waiting for the test results we had a huge snow storm which resulted in Kelly and I having to be pulled down our mountain top driveway and carted off to stay with my sister-in-law since our truck wouldn't make it up to our house. I had a Level III ultrasound which was new technology then. It was scary having five doctors from different specialties peering at the screen which showed our tiny baby. At an ealier appointment I remember, vaguely, our doctor mentioning Trisomy 18 and meeting with a geneticist (I blocked a lot of things out as a coping mechanism). These specialists were all looking for markers which could indicate what may be wrong with our little boy.

January 18, 1996. This date is embedded in my mind forever. I was sitting in my sister's-in-law living room when Hubby walked in the door. He gave her a look and she went outside. The two words he uttered were the two I didn't want to hear. "Trisomy 18." We held each other as we cried. I decided to stop taking the medicine and I wanted to go home. Later that night we were back in the ER. My blessing of a doctor convinced me to remain on the medicine until we were closer to my due date. She felt that the longer he stayed protected inside me the better chance he would have at being born alive. I kept my precious baby boy safe for two more weeks...


  1. Big hugs to you. I know those feelings well, except I didn't make it as far as you did.

  2. Thanks. I will never know which situation is more difficult.