My Story

In my post titled, "Guilt" I wrote about my thoughts, feelings, and emotions I had after Kayla was born and I knew she had Down syndrome.

I haven't written about going through my pregnancy with Kayla, finding out, and knowing there was a possibility she would have Down syndrome. So here is my story (which I actually wrote when Kayla was 15 months old)...

Early on in my pregnancy I read an article in a magazine about prenatal testing. It was the first I heard of this and the article talked about how these tests usually end up causing women more stress then they were worth. They were screening tests and can't give you a definitive answer; you still need a CVS or amnio for that. After reading that article I told Joe I was against having this blood test because I didn't want to go through that stress and he said "ok whatever you want to do." We talked a little bit about Down syndrome, but it was more like one of those things you think "that happens to other people."

Then came the time in my pregnancy when I had a regular OB appt with Dr C and he mentioned the AFP; I said "my husband and I talked about it and we're not going to do it." He said ok and that was that. My next appt was with Dr S (whom I never really cared for) and he brought it up to me; I again said I wasn't interested and then he started questioning me, telling me things (I can't remember what he said) but I felt pressured with him. He gave me pamphlets to read and filled out the lab work "just in case you change your mind."

So then I went back and forth on whether to have the AFP or not; I agonized over whether it was worth it, did it matter...I questioned all my pregnant friends (in the group of ladies I knew 15 babies were born between Jul 02 – Jul 04. There were 7 pregnant the same time I was) whether they had it done and why.

I finally thought oh what the heck, I might as well just so we can be prepared if we need to be.

Then I got the “call.” It was on a Friday near 5pm; and of course Joe wasn’t home. I remember Dr S saying the results of my AFP came back as increased risk for Down syndrome. I remember the sinking feeling in the pit of my stomach, I remember feeling hot and flushed but trying to keep it together. I wasn’t going to break down on the phone w/this Dr (remember, he was he one I didn't care for). He was making it sound urgent that I had to see the perinatologist on Mon - problem was she was in Albuquerque (3 hrs away). I knew she came to our town every other Thur and asked if I could see her then (6 days away) he kept stressing I needed to see her ASAP. I told him I had an appt on Mon w/Dr W for the routine u/s and I would discuss it with him. I did ask him if the test showed any kind of #’s (I don’t know what I was looking for – just something concrete that might make me feel better) He told me no, just increased risk. (Why he didn't give me the actual numbers I don't know).

As soon as I hung up the phone I just hugged my belly and sobbed. It was a scary feeling to be receiving this news. When Joe came home about an hour later he found me in bed, in the dark, and knew immediately something was wrong. I could hear it in his voice as he asked “What’s the matter?” I managed to choke out, “Dr S called and that stupid blood test came back positive for Down syndrome!” (Yes I realize it wasn't actually "positive" but that's how I felt at the time). He just held me and told me everything would be ok; reminding me of all the "false positives" (which again, aren't really false positives because these are screening tests, not diagnostic).

We discussed the urgency of going to Albuquerque and agreed there was no rush because we weren’t going to do anything anyway. We had discussed what we would do with the results, never imagining we would actually get those results. We had said something to the effect of “It’s not like we would terminate the pregnancy just because of something like Down syndrome… we can handle that.” But I also said there was no way I was having an amnio because I was scared of the risk of miscarriage. So we were going to have our routine u/s with Dr W as planned on Mon and go from there.

At the appt Dr W never mentioned the blood test … he did all the measurements then we were done. He said everything looked great. I said, "so the measurements are all on track?" (I was hoping my dates might be off causing the numbers to be wrong). He said, “Yes.” I said "Dr S called Fri about my AFP results." Dr W finally looked in my charts for the results. He said it came back as 1 in 88. I remember gasping…1 in 88?! My #’s are supposed to be a lot higher than that for my age group; it sounded so bleak. He explained that was almost a 1% chance. He said if we’ve already decided we weren’t going to do anything then we could wait until Dr R (perinatologist) came on Thur. She would do a level II and get more detailed info on the baby and look for other markers. Joe kept focusing on the 1% which sounded good to him, but I thought 1 in 88 sounded so low from where it should be. Dr R had no available appts so we had to wait 2 wks to see her. We could have went to Alb but we didn’t see the point. I do remember talking to the geneticist in Alb because she doesn’t come to town w/the specialist. I don’t remember a lot of what she said; I don’t remember her painting a bleak picture or pressuring us to terminate.

We finally saw Dr R and I was so excited to see our baby in 3D. Dr R explained an u/s can only detect Ds about 50% of the time (and again it still wouldn't be diagnostic even then) and I was far enough along in the pregnancy where certain markers weren’t effective anymore. She did say the good news is there is no structural malformations. When I asked what that meant she started talking about bowel, liver, kidney, stomach, lung, heart problems that affect a certain percentage of babies w/Ds and our baby didn’t appear to have any problems. She couldn’t decrease the risk of Ds though. We could do an amnio right there or schedule one for later as that would be the only way to know for sure. I still didn’t want to have one. We talked about getting one later in the pregnancy; like around 32 wks, so there wasn't a risk of miscarriage. We went home thinking well if the baby does have Ds at least there aren’t all those problems with the heart etc; we can handle this right? We had a few more appts with her to measure growth; she wanted to make sure the baby stayed on the same growth curve.

We never did the amnio. I was scared of the results. If I did this test and it came back positive, there was no turning back. I couldn’t go through the rest of my pregnancy hoping and believing in the end everything would be alright. As long as I didn’t get positive confirmation there could still be that chance the baby would be ok. If I got the test I couldn’t go to bed every night praying “Please dear God don’t let my baby have Down syndrome. Please let my baby be ok.”

My first instinct was to jump on the internet and research everything I could find. But I couldn’t do that either because that was like admitting it was a possibility and I didn’t want to go there. There would be no reason to do all the research and reading because I wasn’t going to need it right?

Delivery day (throughout all those u/s we never found out if we were having a boy or girl, we both hoped for a girl though) - I remember after pushing her out then looking down and seeing we had a little girl the same time I heard Joe say ‘We have a daughter!” How elated I felt that it was true; my little girl was here! They suctioned her and put her on my belly and started wiping her off…then things happened in a blur. I stared at her face, at her eyes … and without a doubt I knew.

(What happened next is all in my Guilt post) I kept asking Joe, “Can’t you tell by how she looks?” He said he’s never seen a baby w/Ds before so no, he didn’t know what I was seeing.

I was afraid I wasn’t bonding w/Kayla because I didn’t know how. She wasn’t the daughter I was "supposed" to have. I didn’t know how to voice my feelings to anyone because I was supposed to be strong right? I just gave birth to my first child and this was supposed to be such a happy occasion, why was I crying? I regret I didn’t enjoy her more those days in the hospital. I regret it wasn’t a happy time. I regret that I even thought she shouldn’t be named Kayla. I regret that I didn’t even know if I loved her. And oh how hard that was to put down in writing. But she was my child, my first born, my daughter. She was going home with me the next day and I better get to know her. As much as everyone else was waiting for the blood test, I knew in my heart what I was going to have to get used to.

And now things aren’t so scary. We go to MOPS, Kindermusik, playgroups. She is accepted by everyone we meet. She does everything my friends’ babies do. She plays, laughs, smiles, gives hugs and kisses, signs eats, walks. (remember I originally wrote this when she was 15 months old, so there is a lot more that she does now LOL) What was I afraid of? I look into her “big blueberry eyes” (as grandma calls them) and fall in love all over again. This is what being a mother is. She has already taught me so much.

15 months later I have the daughter I was supposed to have. I have a love greater for her than I ever could have imagined in that hospital room. I am so glad she is KAYLA and not another name, because Kayla is what we had decided on for a girl; and Kayla is who she is and who she was supposed to be.