I've been lurking on this site for a few months now since we started TTC. I searched all the archives and past posts to see if anyone else has posted about similar experiences, but didn't see a single post I know this will be a controversial post but I hope people will be supportive instead of inflammatory.
My husband I are about 12 weeks pregnant with our first. Things were going well, and all seemed normal. Last week I went in for some standard genetic testing at the 11 week mark, something that my OB offers and my insurance covers, so we thought, why not? On Monday we went into my OB's office for our 12 week check-up and also met with the genetic counselor for the test results. Based on the blood work results and the nuchal translucency scan on the ultrasound, we were given the news that our baby had a 1 in LESS THAN 5 chance for down syndrom, aka Trisomy 21. We were shocked and worried... but we kept a shred of hope that maybe we wouldn't be that "1".
My OB immediately scheduled us for more invasive testing, and I went in the next morning for a CVS test where they drew cells from the placenta and did a FISH analysis. By 5PM, we got the definite results... the geneticist confirmed that our baby has down syndrome.
I've never cried so much in my life. I've never seen my husband cry, but there he was sobbing with as much heartbreak as I was. As you can imagine, we had done a lot of online research between those 24 hours from potential to confirmed diagnosis, and we were in complete agreement of what had to be done... but it hurts so much to say it out loud. We've decided that we can't continue on with the pregnancy.
This maybe an unpopular decision and it's not one we take lightly at ALL. Especially because T21 is so widely varied and can come with so many different problems.
But after considering the quality of life for our future baby, and what we could give it, we realized that we couldn't continue. It isn't just an issue of the child being mentally challenged, it is all the medical problems that potentially accompany DS. From heart defects, intestinal malformations, hearing and sight impairment, high risk for respiratory infections and leukemia, and the high likelihood that even if they grow into adulthood they'll eventually suffer from a form of dementia/Alzheimer's. What would happen once we grow old and pass away? Who would take care of our child? If we are lucky enough to have another healthy child one day, then our future child would be burdened with caring for their handicapped sibling. It's just. too. much.
From what we've read on-line, this diagnosis happens more than most people realize, but it's such a taboo topic. This post was so hard to write, but I wanted to share what we are going through. And as I write this, I'm wondering if anyone else here has gone through anything similar... we're only going to tell our immediate families the truth, but as for the few people that know we are expecting, we're planning to say that we "lost" the baby and not go into detail. It hurts that we feel like we have to "protect" ourselves like this, but I can't bear to be negatively judged for what is the hardest thing we've ever had to do, and the saddest time in our life.
Thanks for reading and please keep us in your thoughts...