Thursday, March 8, 2012

4/27/11: worst day of my life (part 2)

Alex and I needed to take a few minutes to clear our heads and come to a decision.

Amniocentisis is a relatively low-risk procedure. That stats range from 1/200 to 1/500 for the risk of a miscarriage. However, those stats would be cold comfort if you are the one to miscarry after an amnio. I can't imagine carrying a baby for almost 5 months and having a test done that you think is in the best interest of your baby, only to miscarry because of that test.

However, we decided that since the baby had 5 soft markers, we didn't really have any option other than having the amnio done. They did the amnio right then and there. It was quite painful, but very quick.

We had the geneticist lay it all out for us. The amnio tests for 98% of known genetic issues. It takes 10 days for the complete results to come in. There is a result called the FSH results that tests for the most common genetic issues and those results come in within 24 hours. The FSH results include trisomy 13, 18, 21, and the major sexual anomolies like Turners and Kleinfelters. We opted to to pay extra to get the FSH results because with both knew that waiting 10 days without hearing anything would be impossible. Also, the doc was primarily concerned with the trisomys, so we would get the results for that right away.

There is also a test called the micro-array which tests for much rare and newer genetic issues. It is not covered by insurance, it is quite expensive, and it has a 15-25% chance of results coming back as unknown. The 'unknown' indicates that there is an issue but the issue has not been identified (keep in mind that genetics is still a new science). We opted to forego the micro-array test.

After the amnio, we went home. We didn't eat, I don't remember talking that much. I do remember staying up most of the night on the couch. It was a stormy night and it calmed me down to watch the rain running down the window panes. I don't know if I believe in God, but that night I made every bargain I could with him. The bargains ranged from very silly trite things to serious things.

I knew that we could handle a child with Down Syndrome. A boy I grew up with had it and we knew he was different, but he was still our friend and we involved him in everything. Granted, our life plans would be altered and our 'normal' would be something very different from most people's 'normal', but we could do it.

What killed me was the thought of the baby having the other issues. Edwards and Patau are really scary syndromes. Was it fair to bring a baby into the world just for it to live in suffering for a few minutes or a few  months? That is a question with no right answer. That is a question that must be devastating to have to answer. I think that either way, you must be haunted for the rest of your life.

Alex went to work on 4/28, I called out sick for the remainder of that week because you need 72 hours of bedrest post-amnio. My parents came over to spend the day with me. We didn't really talk too much. We watched the movie 'Salt', I couldn't tell you what it was about, I didn't pay attention.

I cried a lot that day. I knew that we would be getting a phone call with the FSH results sometime that afternoon. I didn't want to get the call, because if I didn't get the call, it meant I would never have to be told that the baby had something wrong with it.

I was hoping that Alex would be home from work before the call came in. He is always home by 3:45. The phone rang at 3. At that time, I was laying in my bed crying while my parents stayed out on the couch. I had asked them to leave me be for a few minutes.

I looked down at the phone and saw that the number was from the high-risk doctor. I answered and the geneticist spoke very quickly. She told me that the FSH results were all normal. I asked her to repeat herself.  She did. I remember sobbing while saying "Are you serious?". My parents heard that and came running in. My mom had tears streaming down her face and my dad has his jaw set. Then they saw me beaming from ear to ear. They looked so happy. I thanked the geneticist and got off the phone.

I told my parents that the results were normal and we all hugged and cried happy tears. When Alex came home, we were all sitting on the couch. Alex looked so anxious. I didn't say anything. I just smiled at him, my dad asked if he wanted a beer. Alex looked kind of confused and I told him that we got the call and the FSH came back normal. He looked happier than I had or have ever seen him look. The hope and happiness in that room was intense.

We knew that we still had to wait for the complete results, but we were condfident from the FSH results. Nine days later, the amnio came back normal.

I have done a lot of research since this experience. I still have yet to come across another story where 5 soft markers turned out okay. There is information about 1, 2, even 3 soft markers, but 5 soft markers is a rare occurance.

If anyone reading this has had a bad anatomy scan and wants to talk about it, leave you email address in the comments section.

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