Sunday, December 28, 2008

In the beginning. . .

The day I found out that my optional bloodwork came back showing a high risk for Trisomy 18, I was walking down the hall at work proudly thinking, "I have four healthy children." (For those of you who don't know me, I have an 18 year old, a 17 year old, and a 15 month old. In my statement, I included this baby.) When I got out to my car to leave work, I saw that I had a message from my doctor's office. I called. No answer from the girl who had left the message. I have to admit, I was quite nervous. I called again. She answered. She told me that my bloodwork was in and that it showed a high risk for a condition known as Trisomy 18. But it's only high risk. Not to worry. My voice was shaking as I asked her what Trisomy 18 was. Oh, it can mean that your child can have profound mental retardation. How do you spell it? You see, I had never heard of this. I thought the bloodwork was for Down Syndrome and other disorders, having no idea that Trisomy 18 was one of those "other disorders." She told me she would make an appointment with a high risk doctor and would get back in touch with me once she did.

I have to go ahead and say that the Internet is a blessing and a curse. My first reponse was to go straight to it and look up exactly what this Trisomy 18 was. I was shocked. This wasn't just a condition that would affect my child's mental condition. This is a condition that will affect my child's life!

Trisomy 18 is when the 18th strand of chromosomes has an extra chromosome. According to some of the research I've done, roughly 2000 babies are born with either Tri-18 or Tri-13 in the United States each year. 95% of babies with Tri-18 miscarry. Roughly 10% of the children born with Tri-18 survive past their first birthday. The odds are totally against these children.

Typical characteristics include:
Heart defects
Kidney problems
Part of the intestinal tract is outside the stomach (omphalocele)
The esophagus doesn’t connect to the stomach (esophageal artesia)
Excess amniotic fluid (polyhydramnios)
Clenched hands
Pocket of fluid on the brain (choroid plexus cysts)
Rocker bottom feet
Delayed growth
Small jaw (mycrognathia)
Small head (microcephaly) Low-set ears
Strawberry-shaped head
Severe developmental delays
Umbilical or inguinal hernia

Needless to say, I bawled after reading this. How was I going to tell my husband? How were we going to handle this? What did this actually mean for us? How could I watch this happen to my baby? The questions went on and on, but it was impossible for me to keep in mind that the test showed high risk. Basically, my heart was broken, and broken hearts just seem to forget how to see the positive in situations.

I can't tell you how long and how many times I cried that day before Dave got home. When he got home, he was in such a good mood. I didn't have the heart to tell him, but I suddenly felt this sense of strength that at least calmed my own heart.

After dinner, I broke down and told him. It was so hard to do. After putting the baby to bed, we went back to the computer and looked up information. We went to the legacies page. BIG mistake! I cried like a baby as I saw the pictures of these precious babies and read their descriptions, descriptions that included how long they had lived (if they had lived at all). Maybe we shouldn't look at this page, he said.

At this point, our only hope was that the Level 2 sonogram that was to be scheduled for us would show evidence that our baby didn't have this condition.

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