Saturday, March 27, 2010

This Can't Be Happening to Me

What the doctor was about to tell me was certain to derail my life. I quickly pulled myself emotionally out of my mind, and tried my best to listen objectively and carefully. I was amazed that I was able to have an intelligent conversation about such a profound situation that would ultimately break me down.

I put on my stone face as I listened to the doctor tell me that my child did not, in fact, have a choroid plexus cyst. Rather, Caleb had a cyst next to his choroid plexus and it was much more "significant" than that minor cyst we had suspected. Now, the word "significant" can mean many things, but I knew that when used in medical terms like this, it mean "big, not good, dangerous, you are totally screwed."

In addition to the "significant cyst" the doctor noted several other abnormalities of the brain. He explained that the corpus collosum, which acts as a highway to pass information between the 2 hemispheres of the brain, appeared to be developing abnormally. He also told us that the left frontal lobe appeared to be developing abnormally as well. In addition to this semi truck of despair, the doctor gave us one thread of hope; after a thorough exam of the heart, it appeared to be normal. On this day, good news seemed hard to come by.

Needless to say, we were in shock. We had not anticipated such terrifying news. The doctor assured us that his team would try as best they could to give us a diagnosis and an accurate prognosis, but he explained that brain abnormalities are extremely difficult to judge. Many people with problems in these parts of the brain experience a wide range of symptoms. He explained to us that he felt it necessary to get more information on these abnormalities and then he could better explain the situation and the possible outcomes. He recommended that I have an amniocentesis, a fetal echocardiogram, and a fetal MRI in order to get the most information possible. I agreed to have all three of these procedures out of a desperate need to understand what to prepare myself for.

I didn't realize that they meant the amnio would be immediate, and before I knew it, I was approached with a clipboard and instructed to sign my consent to this procedure. It was all happening so fast. In marched the team of an assistant, the technician, a nurse practitioner, the doctor and his resident. With all of them squished in my tiny exam room, they began setting up viles, preparing a needle, applying iodine to my belly, and finally, performing another ultrasound in order to properly insert the needle.

My head was spinning. I told the doctor that I don't do well with needles and I looked up at the screen as he inserted it just below my navel. I couldn't believe that I could actually see the needletip poking through the uterine wall on the screen. I layed perfectly still as they drew vile after vile of fluid from poor Caleb's dreaming pond.

When they had completed the procedure and cleaned me up, the doctor went over the signs of complications to amnio. He rattled off the list as a stared into space, now concerned not only for Caleb's quality of life, but also for his potential loss of life due to my decision to have the amnio. I knew that I needed to have it, but at the same time, I felt like I added insult to injury.

I was discharged from the office with instructions to call the hotline if I noticed any of the warning signs they had listed. On Monday, I was to receive a call from a nurse who would set up my fetal MRI and fetal echo. Being that it was just 5pm on Friday, I knew it was going to be a long weekend of worry.

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