Thursday, March 2, 2017

So sad behind the scenes

Recently this story about Iceland has been circulating. I have talked about my pregnancy with Lamb 2 on my blog before, but it is worth repeating again since this story is out.

When I was pregnant with Lamb 2 I went to a new midwife because my midwife for Lamb 1 thought 1 1/2 hours was too far away for another birth since Lamb 1 was born less than an hour after I arrived at the hospital. The midwife for Lamb 2 ordered what I considered regular blood tests as I was a new patient for her. These blood tests came back positive for birth defects such as Down Syndrome. We lived in rural MN so the midwife ordered a level 2 ultrasound in the Twin Cities to see if we could tell anything else.

While we waited for the ultrasound, Lamb 1 fractured his leg, but we didn't know it was fractured until about a month after he fractured it, the x-rays didn't show that it was broken until it was healing. So we traveled to the Twin Cities with a toddler with a broken leg that we didn't know was broken and due to an early morning appointment stayed in a hotel the night before. Ram drove and helped take care of Lamb 1 in the office during my appointment.

The oddest part for me was the first thing they did at this level 2 ultrasound was had us meet with a genetic counselor. She took down our whole history. She was kind of disgusted that I only have one sibling that was not married at the time (so no children) and Ram had no living siblings (and they never had children). She admitted without knowing about our nieces and nephews she didn't have much information to go on. I didn't understand that, because what if we had several siblings but we were the first ones to start our family? And neither Ram or I can help that we come from small families! Both Ram and I repeatedly asked why we couldn't have the ultrasound before speaking to the genetic counselor. That made it clear to me that they wanted us to decide on abortion with their "facts" of our genetics, before we even saw the baby on the screen. Because she had so little information about our family she recommended an amniocentesis. Because of our miscarriage between Lamb 1 and Lamb 2, I immediately declined an amniocentesis due to the risk of miscarriage after amniocentesis.

It was finally time for the level 2 ultrasound. I was really looking forward to seeing our baby in more detail than a normal ultrasound. I have had a lot of ultrasounds with all of my pregnancies and miscarriages and this level 2 ultrasound was the most silent ultrasound tech I have ever had for any of my ultrasounds. He only talked when necessary. Then another tech (doctor?) came in and was supposed to explain the results to us. But again, he said very little, we found out that Lamb 2 was a boy (the only pregnancy that we had a gender reveal-due to all this testing I wanted to know the sex to pray for him or her) and very little more. Again he recommended an amniocentesis. His reason-Lamb 2 was too active to really get good measurements. Both Ram and I left that ultrasound with the feeling that they did not suspect Down Syndrome, but they couldn't say that to us because they were afraid we would sue them if he was born with Down Syndrome. But they would not tell us one way or another, even what they suspected, just recommended an amniocentesis.

At the time we had good health insurance so our out of pocket cost was parking for the appointment; the hotel one night; gas to go 4 hours; and the time and mental stress of the appointment. Ram and I were quite disgusted that we received so little information for all that.

The rest of the story is that I didn't have any more ultrasounds during Lamb 2's pregnancy and we made clear that we were keeping the baby no matter what. But I would have really liked to have more information to be more mentally prepared and educate myself some more if he was born with Down Syndrome. He was born without Down Syndrome.

I left that appointment and started doing my research. At the time, (11 years ago) the best estimate that I could find then was that 75-90% of Americans with a positive blood test for Down Syndrome abort their babies. (The statistic in the story referenced above is higher, but I am not sure if that is a statistic for a positive blood test, ultrasound, or amniocentesis). It made me so sad. The way they do these appointments for level 2 ultrasounds is encouraging abortions.
1. We had to meet with the genetic counselor before they even looked at the baby on the level 2 ultrasound.
2. They wouldn't give us very much information no matter how many questions we asked.
3. They worked very hard to get me in for my level 2 ultrasound before it would be too late to have an abortion.
4. They encouraged amniocentesis, which causes miscarriages in some cases. (Even a small percentage of miscarriages due to amniocentesis is too much in my mind.)

Due to so many abortions after a positive blood test for Down Syndrome, there is no good estimate of how many of these were false positives like Lamb 2. So we have no idea how many of these babies were just fine like Lamb 2 but were aborted. I'm not even sure if they have any way to report that Lamb 2 was a false positive. It doesn't really matter if they have Down Syndrome or not, none of these children should be killed.

Lord have mercy. Christ have mercy. Lord have mercy.

When I was pregnant with Lamb 3 I refused any blood tests like this one that I had a false positive on when I was pregnant with Lamb 2. I refused to go through all that again when I knew we would keep the baby. For Lamb 3 I had a normal ultrasound at 20 weeks. Then as I got closer to delivery day I had several ultrasounds due to the fact that I only gained 10 lbs in that whole pregnancy. They never found anything abnormal in any of those ultrasounds, but due to the little weight gain they induced me a week early. Their ultrasound estimate was he was 4 1/2 lbs on induction day. But he was born healthy and 6 lbs 10 oz. I am thankful that he was born healthy and I don't regret the induction because the midwife was going on what information she had been given. I know that sometimes ultrasounds give life saving information. But I can see from Lamb 3's pregnancy, that even ultrasounds don't always give correct information.

Looking back, I am glad we had these experiences with Lamb 2 and Lamb 3 because it really opened my eyes to what the medical profession does during pregnancy. Please pray for pregnant women and their spouses to be able to navigate the information given to them during pregnancy and make wise decisions. Until Lamb 2's pregnancy, I had no idea the amount of decisions that need to be made during pregnancy. I already knew there were a lot of decisions to be made during birth. Continue praying for families blessed with a child with Down Syndrome. Continue praying for unborn babies.


Jody said...

Yes. This is part of the reason we refuse routine ultrasounds. If there is some real indication that something is wrong, we have an ultrasound. That's it.

The midwives and doctors at the practice we go to actually were sued in a "wrongful life" lawsuit because a baby was born with Down's. I was shocked.

Ewe said...

I need to clarify that I think that one regular ultrasound is important. We know someone that had surgery on the baby immediately after birth because of what was seen on the ultrasound. If they hadn't had an ultrasound the mother wouldn't have delivered at a bigger hospital that was prepared for the surgery. I believe you just need to be careful with the information given at the ultrasound.
With my first pregnancy, the doctor was very concerned that I hadn't had an ultrasound yet and it was getting close to 20 weeks. She wanted to make sure I had enough time to terminate after the ultrasound. After the ultrasound I changed doctors! I was never concerned when that one ultrasound was, just that they looked at the organs carefully because my dad's family has something to look for at the ultrasound that would possibly mean surgery for the baby. None of our Lambs ever had it and it was distant in the family tree, but I wanted to use ultrasound technology here if necessary.