Saturday, January 16, 2010

Tests during pregnancy

A few days ago I received an e-mail from a friend that is pregnant and when she got her blood tests back it showed her baby could have Down's Syndrome. She is waiting until she goes for further tests/ultrasound to know more. She e-mailed wondering if any one she was e-mailing had any experience with this. I immediately called her after I received the e-mail so I could tell her our experience with Lamb 2.
When I was pregnant with Lamb 2, the blood test came back showing a possibility of Down's Syndrome. The next step was to drive 4 hours to have a level 2 ultrasound. When I called to make the appointment I had to wait several weeks to get in. That was frustrating to wait and not know anything during those few weeks. It was really bad timing for this level 2 ultrasound because Lamb 1 had broken his leg but we didn't know that it was broken at the time. So we headed for the Twin Cities and spent the night in a hotel rather than get up in the middle of the night to make it for our appointment.
The FIRST step at our appointment was to meet with a genetic counselor. There is so much wrong with this system that you meet with a genetic counselor BEFORE the ultrasound. The genetic counselor was very concerned because Ram has a first cousin with Down's Syndrome. Also Ram's brothers are both dead and my sister is not married so she had nothing to go on for our nieces and nephews. She really encouraged us to have an amniocentesis. We declined that. We listened to the whole ridiculous talk and then we finally had the level 2 ultrasound. I was expecting to be able to see much better, but the level 2 ultrasound seemed just like a regular ultrasound for my untrained eyes. The ultrasound tech did his job and didn't talk to us very much. Lamb 2 was so active that he couldn't get very good photos of some important parts to see if there was a likelihood of Down's. (Ram's dad heard that and said there was no way our baby had Down's if it was so active that the ultrasound tech couldn't even get good photos!) For example he was punching so he couldn't get photos of his hands. Then another man came in and told us what the ultrasound showed. He was very careful with his words, but without being this blunt, he said there was not very much likelihood of Lamb 2 having Down's Syndrome. He also encouraged us to have an amniocentesis, but he also said there wasn't much chance of having Down's Syndrome so he didn't encourage the amniocentesis as much as the genetic counselor had. Both this man and the genetic counselor talked there is 1 in ____ chance of this, 1 in _____ chance of this, etc. That meant nothing to me. Although they gave plenty of chance for questions, we knew so little about this that we didn't even have questions to ask.
We left the appointment not knowing a whole lot more than when we went. We knew from the beginning that we would keep the baby so it seemed like a waste of time to drive to the Twin Cities and back for the level 2 ultrasound. We decided then that if we had any more children we were not going to have unrequired blood work done during pregnancy. We declined it for Lamb 3 and we will also decline it for any future Lambs. We do chose to have regular ultrasounds during pregnancy because sometimes they show something that can be corrected during pregnancy or we would know we need to deliver at a bigger hospital in order to have the baby at a NICU.

Although it was a waste of time, I was glad that we went through this whole experience because it was such an eye opener to me. It is so so sad the way the system works that so many are aborting their babies when they hear this news and there is no way to know if the news is a false positive.
This is from the March of Dimes website. "Out of every 100 women who take a screening test, about 5 (5 percent) have an abnormal result. However, only about 4 to 5 percent of women whose test results show an increased risk for Down syndrome actually have a baby with Down syndrome." Why in the world do they even administer a test that is incorrect more than it is correct?

I chose to share this on my blog even though it happened 4 years ago because I was comforted to hear from friends that also received false positives. My friend's unborn baby is in my prayers. I know that even if does have Down Syndrome she will keep it. In fact she will participate in the March for Life in D.C. in a few weeks. May the Lord bless and keep all unborn babies whose mothers receive a positive on their bloodwork during pregnancy. May the Lord bless and keep all the mothers who worry about a positive on their bloodwork during pregnancy too.

1 comment:

Tara said...

For those of us who have a child with Down syndrome, we are blessed indeed! :) Unfortunately, most women with a positive screening will get an amnio. Of those who test positive for Ds, 90% will terminate.

It is heart wrenching.