You know how sometimes you want to share a story, but first you need to tell a bit of history to ensure that it all makes sense? I know that I’m supposed to share this part of our story with you. To really let you know where I’m coming from. To help understand how I see things today.
Many people have asked me recently if I am excited about Sarah Palin’s nomination and the recent national attention that has been given to Down syndrome as a result. While I would like to give only a resounding “yes!” there is a part of me that wants to answer “maybe,” and even “no.”
You see, this last week has brought up some tough issues for me to deal with as Charlie’s mom.
But first a bit of history….
On January 1, 2007 I found out that I was pregnant with Charlie. It was a bit of a surprise (as was Henry) in that we assumed it would take us a few months to get pregnant. That was not the case. Again.
From the moment the sperm and egg meet up and the first cells begin to divide a baby’s genetic destiny has already been written. With his first cell division, our little baby had a little “extra” on the twenty-first chromosome in each cell of his body.
Pregnancy is something that I do well (we all have our talents…) I love it. I’m the crazy woman who says that she would be pregnant all the time if possible. Sure I have a little nausea here and a little heartburn there, but a good majority of the time I love every minute. My pregnancy with Charlie was no exception.
We selected an OB this time, as the family doctor we visited with Henry had moved out of town. Our new OB also happened to be a family friend. Our appointments were routine, nothing unusual. I opted out of any of the prenatal testing done via blood-work (quad-screen, cystic fibrosis, etc.) I never took the tests with Henry and didn’t see the point our second time around.
Tuesday, April 24th, my 20-week ultrasound was scheduled. The only thing that I had on my mind was “is it a boy or a girl?” It never ever occurred to me that they would be looking for other things during the ultrasound. (OK, of course I knew that they would be looking for things, I just never put any thought into what they were looking for, because it wasn’t relevant to me.) The ultrasound went smoothly (at least that’s what we thought) and Alex headed off for a meeting while I stayed behind for a quick check-up with my OB.
I will always be able to tell you what room, where I was sitting, and what I said when my OB told me that they found some soft markers for Down syndrome when looking at our baby.
“I’m not surprised.” And then I burst into tears.
I was reassured that the soft markers were really nothing to worry about – had our baby just had one and not both – my OB said that she probably wouldn’t have even mentioned it. That the issues would more than likely resolve before our baby was born. The markers they found were a “bright spot” on his heart called an echogenic focus. The other marker was that our baby’s kidneys were slightly dilated.
Never the less, three days later I was in a hospital room getting a Level II ultrasound with a Perinatologist from the University of Washington observing. Prior to that we had met with a genetic counselor in a conference room. We were nervous. We wanted to get through our appointments and find out that everything was just fine with our baby and move on, life as usual.
Want to know something funny? It never really occurred to me why we were meeting with all of these people. I mean honestly, what was the genetic counselor going to tell us? She did a bunch of calculations – my age (then 27), Alex’s age (29), our family history, (no one has or had ever had Down syndrome), etc. And we were already pregnant, so weren’t we kind of too late to be discussing this baby?
I simply assumed that they wanted to check out our baby a bit more – to determine if he had Down syndrome or not. And then to assess how we would handle the rest of my pregnancy if the baby did indeed have Down syndrome. You know – would we have to see any specialists, could we still have our baby in our hometown, or would we have to travel to the “big city?” Those were the thoughts that were running through my mind.
But of course, I knew that all of this wasn’t really relevant – after all – these kinds of things didn’t happen to me. I thought about how we would all laugh when we looked back at this appointment – how we were so nervous – and for no reason!
I remember joking during the ultrasound with our “crew”- the perinatologist, genetic counselor, and ultrasound technician – about what great service they were providing and how nice it was that they were able to see us so quickly.
I didn’t realize that there was another reason they were so quick to fit us into their schedule.
“Well you are 21 weeks today, so you only have one week left.”
“Huh?” (I didn’t actually say this, but I know my face did.)
“If we find some more markers that indicate Down syndrome we will want to do an amnio today. And since an amnio takes 7 full days (to culture) it would be one week from today that we would get the final results.” And that doesn’t leave us much time if you decide to terminate.”
I had clearly missed an important part of this appointment. You see, I was just looking for reassurance that things were OK with my baby. Or to find out that he did indeed have Down syndrome. Either way I just needed to know. That was my mindset when I walked into the ultrasound room.
I had no decisions to make. These weren’t my decisions to make. I was just hoping to learn more information about my baby.
Charlie’s image was on the screen right next to me. He was sucking his thumb. He was moving around, kicking me and “hiding” from the ultrasound tech. I have pictures of Charlie from that day.
“It doesn’t matter what you find, we won’t terminate.”
I can’t believe I’m having this conversation.
I guess I would have called myself pro-choice, but I didn’t believe in abortion myself (can those two go together?) And wasn’t it one thing to not want a pregnancy, but another issue altogether to want to terminate not because you didn’t want a baby – but to terminate because you didn’t want that particular baby?
After almost one hour in the ultrasound room closely looking for any signs of Down syndrome, the perinatologist said that he found nothing that would lead him to believe that our baby was anything but “perfectly healthy.” He was even 97% sure.
And so we went home.
August 30, 2007 Charlie was born. The moment I saw him I knew. So did Alex. I know my doctor did too. The Neonatologist said that she was 99% sure, but wanted to run the blood test to confirm. Six days later the blood work confirmed what we already knew – that Charlie has Down syndrome.
Oh, and the answer to your question? I haven’t forgotten – it’s in the next post.