Monday, April 13, 2009

Swimming with sharks in the gene pool


Before I became pregnant with my first child I had no idea I would have to decide whether or not to test my unborn child for genetic defects. When the midwife asked us if we wanted genetic testing my husband and I agreed that we didn't want it. Let me premise our reason for rejecting genetic testing with the fact that neither of us goes to church or has ever read The Bible. However, we both believe in God and just think it would be pointless to test our baby because I would never terminate the pregnancy. We both believe that everything happens for a reason.

In light of the fact that my son was diagnosed with Autism at 18 months (he is now 10) we made the same decision when I was pregnant with my daughter (she is now 7). My daughter was born with pneumonia and acid reflux and spent her first ten days of life in the NICU. She was diagnosed with Asthma last fall, and most recently, Segmental Neurofibromatosis (rare genetic disorder) and ADD. My son was diagnosed with Epilepsy 2 1/2 years ago.

I have learned so much from my children and love them so much I can't imagine life without them. I am fascinated and surprised by them every day.

I fear a world that seems to be quickly approaching reality where you can test your unborn child for every known genetic defect. There are so many people in this world that have challenges who have touched peoples lives and contributed something positive to society. What kind of world will we have when everyone is "perfect"?

4 comments:

Tripletmom said...

You kids are gorgeous!

Wow, I looked up Segmental Neurofibromatosis after seeing this and I think I might have the milder version of that - see the first two pictures here, they are exactly what showed up on my abdomen recently (and have been ignoring):
http://stanford.wellsphere.com/pictures/segmental-neurofibromatosis

I agree with you about the genetic testing. All three of my triplets all had some 'warning signs' of Downs during the prenatal ultrasounds. We were offered amniocentesis, even though they usually do not recommend that during a high risk pregnancy. The doctor was going to leave the room so we could discuss it and DH told him to wait and said to me, "Even if the test came back positive it wouldn't matter, right?" I agreed, so DH told the doctor we were not doing the tests. It was a interesting to see the surprised look on the doctor's face!

Having a family with all three kids and myself on the autism spectrum, we are quite sought after for genetic testing. I refuse to submit our genes to a study that might end up identifying how to do prenatal screening for autism (even though the researchers won't ever admit that to participants, that is what will happen when they find the genes that cause this).

Ever see the movie "Gattaca"?

Queenbuv3 said...

Oh yes, my husband and I saw Gattaca when it came out. Pretty scary stuff. We joke that my husband is a high functioning Autistic and I have Asperger's. We may seem reclusive to other people but we take care of our responsibilities and our children and cats so who cares, LOL! By the way, do you watch Big Bang Theory? If so, Sheldon is soooo Aspie!! What do you think?

Tripletmom said...

I have not seen it, but I keep hearing good things about it then forget. I just put it in my Blockbuster Queue, thanks for reminding me.

Yes, DH and I both are pretty reclusive. We always get people telling us to go out to relax... well going out is NOT relaxing to either of us, lol. We'd rather stay home and have one of our moms take the kids to their house - so we can have all of our 'stuff' and do what we want instead of having to deal with a bunch of strangers if we go out.

Jen said...

I agree, but I think it's more about what people do with the answers they get. When I became pregnant with our 4th child, I knew it was a possibility that he could have Fragile X because my older two boys were diagnosed with this. (I found out I was a carrier after my first son's diagnosis.) BUT, we chose to NOT have any testing done while I was pregnant, because the result wouldn't change anything; he's my baby! We did have him tested at 1 year. What do the results mean? Well, Fragile X explains their mental retardation and autism, and gives me the heads up to some possible complications I may have as I get older--instead of being in the dark if I were to develop premature ovarian failue (which I don't have), or the slight possibility that I may develop FXTAS, which is often misdiagnosed as Parkinson's, Alzheimer's, dementia, stroke, or peripheral neuropathy. If it's misdiagnosed, it won't be treated the correct way. Do I worry about what "could" happen? No, but it's nice to have the knowledge.
And for my daughter (she if one of the "fortunate ones;" she has the full mutation, but has little to no obvious affects from it), it means that she goes into getting pregnant with her eyes wide open. Does it mean she may choose not to have children? She might decide not to, but I doubt it. Does it mean she may choose to adopt? Maybe.
With all this being said, really, I agree with what you are saying, which is why I didn't have prenatal testing. :) Just giving another side to the knowing the genetics.
I'm enjoying reading through your posts! :) Your kids are beautiful!