False Starts

False Starts

I typed about a month’s worth of blog posts - quickly, without thought, full of grammatical and spelling errors. I figured I would go back, publish them all at once so when you read this you’d know where I was from the beginning.
Except my work computer ATE the blog posts. All of them. Gone.
So again, I start anew.

I tried to be official about it - start up with Blogger proper today. But Blogger had other plans and wouldn’t let me sign up a second blog. So we are back to this. You’ll just have to get two updates in one day.

In case you haven’t guessed, I’m pregnant. For most people, the news of a planned pregnancy is fun and scary and exciting. For me, I peed on a stick and cried. I lost two boys to congenital disorder of glycosylation 1g last year. You can read more about my poor boys and their unfortunate genetic makings HERE.

After back-to-back terminations (one in March, one in October), and a blighted ovum in the middle, we found out by EXOME sequencing that we carry a rare and fatal recessive genetic disorder. This means that we have a 25 percent chance of having an affected baby with each pregnancy. Unwilling to go through the terror of termination again, we decided to go with IVF/PGD - expensive, miserable, risky IVF. It was not a decision we made lightly or happily, but we celebrated with a bottle of amazing cab merlot and a fancy dinner.
A month later I peed on a stick and cried. Then I sucked it up, put on my big girl panties and canceled the appointment with the reproductive endocrinologist.
Game on.
There was a big part of me that was convinced that this baby was another blighted ovum. In my mind, the early miscarriage of an unviable embryo is much less traumatic than the termination of a viable fetus.
Doctor’s appointment after doctor’s appointment showed a little bean with a hummingbird heartbeat. Every time I went in and sat on that paper-covered bench, I was certain of bad  news.
Then came the big, scary NT scan. See, with my first son, we didn’t get the NT scan. No one knows if I denied it or if it wasn’t offered to me. Certainly no one explained what an NT scan is or what it does or what it means. People blithely call it “the Downs Syndrome Test” which is stupid, stupid, stupid.  They decline the test because they believe, stupidly, that a). it has a high false positive rate, b). that if you are young and have no family history that you don’t need the scan and c.) that it only tests for DS.
Such is not the case. An increased nuchal translucency (the thickness, in millimeters, of the space behind the baby’s neck), is a soft marker for chromosomal or cardiac issues. Chromosomal means ALL THE CHROMOSOMES. ALL THE GENES. ALL THE PROBLEMS.
And the so-called “false positives” are a misnomer as well. See, you can’t have a “false positive” on a scan that yields NO positives and NO negatives. All the NT measurement does is place a value of RISK on a pregnancy. What is the POSSIBLE RISK of chromosomal issues, such as and including Down’s Syndrome? If the risk is shown as increased, further testing can be done.
Let me put it this way: If you called your insurance agent and asked him to do an assessment of your home based on risk of fire, and he said “Wow, you have a lot of space heaters and candles in this house. I think you might be at increased risk for a house fire.”
Would you take that to mean “Dude! Your house is on fire!”
I didn’t think so.

Ignorance, I can tell you, is not bliss. We found out that my son, at 19 weeks gestation, was doomed. We did not have a genetic diagnosis, so we used our last weeks of my pregnancy to get every test and see every specialist we could as we prayed for a miracle that would never come. A late term termination is a rushed affair, leaving a mother with no time to prepare herself, no time to grieve. Your body is ravaged and your soul is damaged. Losing my second son was no picnic, and I grieved harder for that baby than I have ever grieved in my life. But physically, my body, which still did not understand, forgave sooner.
Not going to terminate because you WOULD NEVER DO SUCH A THING?
I get it. Want to have a live baby with the best chance of staying alive? Have the NT scan and know your medical options for that child. Know if you need a level three NICU, a surgeon on call, a high risk delivery room with a team of specialists waiting. Determined to do all you can? All you can starts with early assessment and a medical plan. IT STARTS WITH AN NT SCAN.
So we scheduled ours for our third pregnancy. And we waited for 10 weeks 4 days to arrive. And it did.