To Know or Not To Know

Being pregnant and already having a child with heart defects, we have been doing much thinking in our house about how far we want to go with testing in this pregnancy. Other than the normal ultrasound, we had no testing done on either Jamie or Clare (not that it would have mattered with Clare because the typical genetic tests do not include Williams syndrome, plus her heart defects could not be seen on the ultrasound). As I mentioned earlier, we had already decided to decline any testing through blood samples, amniocentesis, or CVS. However, when my OB brought up undergoing a Level 2 ultrasound (a more detailed ultrasound, which will be done by a perinatologist, who is trained in detecting fetal abnormalities using ultrasound) and fetal echocardiogram, it did make us pause. To make a long story short, we are going forward with these two tests, especially since they are non-invasive tests (unlike an amnio, which poses a risk to mother and baby). However, I still have mixed feelings on this.

Part of me is of the same opinion that what is the point to these tests? That is my feeling on the other testing offered. It would not affect my pregnancy, except make me more nervous and stressed! I don't buy into the argument that finding out prior to birth if your child has a genetic problem can help the parents prepare for having that child. I do not think anything can prepare you for that. It's like reading all the parenting books while you're pregnant - sure, you may get ideas for what you like and don't like, but you have no idea what your child is going to be like. A thousand books cannot prepare you adequately for the reality of parenthood. And just the fact of knowing your child has special needs cannot prepare you for the reality of dealing with those needs. If I had known Clare had WS while still pregnant, those would just have been words to me. I wouldn't have known that Clare would have no feeding or calcium issues in infancy (thank goodness), but would be on the severe end for heart defects. How could I predict that at 19 months old, she would not be crawling, but is starting to say words. I just don't know if I want to know if there is something wrong with my baby. Our chances of having another child with heart defects is so slim, but whoever thought we would be that 1 in 7,500 (or 20,000 depending on the study) that we would have a child with Williams syndrome? I certainly never expected it. That always happens to someone else, not you.

I discussed this a while ago with a friend who a few months ago found out her baby in utero may have heart defects and that there was a possibility the baby only had a 50% chance of survival to term. (She has since given birth to her miracle baby - you can read their story at www.anniesheart.blogspot.com, if you're interested.) Naturally, we talked about what they were going through and what we have gone through. Not that I would wish this on anyone, but she is the first person I know (and knew prior to having Clare and not meeting her because of Clare) to go through the same scares and emotions that we have gone through, so it was nice to have someone to talk to about it. Watching their emotional roller coaster these last few months made me appreciate that I didn't know about Clare's diagnosis while pregnant. In many ways, I was cheated out of Clare's babyhood. That first year of life that should have so much joy in it while watching your child grow was not the same for us. I am thankful I was not cheated out of having a normal, happy, fairly stress-free pregnancy.

But to wrap this long story up, we are going to have the ultrasound and echo. I guess, if anything, if everything looks normal, at least there is that peace of mind. Like I said, I am still on the fence about the whole thing. Maybe because I do have that teensy tiny itsy bitsy little piece of fear in me that they will find something. But you know what? If they do, we will deal with that as it comes, just like we have done and still do with Clare.

(So the photos have nothing to do with the post, but they were too funny not to share. This was Shawn and Jamie's "surprise" to me one night before bed. Clare thought it was hysterical, too. She laughs more often now and was cackling and flapping her "wings" the entire time she was flying around. The costume is from one of Jamie's Build-A-Bears. She actually looks big in something!)