Monday, April 28, 2008

The Gene Screen

When you are over the age of 35 and pregnant you fall into a group I won't call high-risk because it makes me feel like a bungee jumper or spelunker. I prefer to use extreme-care or hyper-vigilant to denote the little extras tests and monitoring they give you when you are ahem - more mature than other whippersnappers in the waiting room.

Everybody gets offered genetic screening when they are pregnant, but we extreme-care mothers are usually strongly recommended to take part in these tests as certain genetic abnormalities seem to occur more frequently in older mothers. Sound like a textbook? I've done my research. So at about 11-12 weeks they do a blood test and ultrasounds, measuring for various physical indications as well as blood levels to detect whatever stuff it is that might provide a clue whether or not your baby is at risk.

So I get my tests, including a very innocuous finger prick and a pretty good-looking ultra-sound if I do say so myself. Then two weeks later a nurse calls with the results. The thing to remember with these results is that they are probabilities, estimates of risk. If you took Statistics in college, now would be a good time to remember some of that information to get a grip on some of the numbers they give you.

The nurse spewed off three sets of ratios for my risk, my results with my age, my age alone and an average 35 year-old's risk. She's rather cheery and sweet, but the information she gives me is that I have a positive risk for Downs as a result of my tests and the ratio is 1 in 98. She suggested an amnio centisis to get definite results and wished me good day.

So I kind of panicked. 1 in 98. Good odds for a horse, right? That means 97 other babies came out perfectly healthy. Still the number seemed scary as I looked at my notes from her phone call and I called my sister, her husband the doctor, my father, my mother, my girlfriends and of course Justin. Over the next two weeks, I searched websites and read tons of blogs about Downs Syndrome, 1st trimester screening tests, and amniocentesis and the risks involved with that. I know amnio is performed with an ultrasound and there are millions of women that have had successful procedures done, but I couldn't shake the image of a long needle puncturing B the G's little water balloon we built in there. My warm fuzzy pregnancy glow began to fade to a dull, weak 25 watt attic light bulb as I tried to find out the best decision for moving forward with this news.

Too much information is a dangerous thing and with the internet, I could get any kind of information I wanted to back up any opinion I began to form. Countless blogs and web-chats from women with false positive tests for these screenings. High risk of miscarriage for amniocentesis. Low rates of miscarriage for amniocentesis. My doctor gave me a ratio of 1 in 300 for risk of miscarriage with amnio, but said the important thing to remember was what I was going to do with the information once I found out the results. In other words, would I terminate if the baby was positive for Downs Syndrome? If so that's one thing, if not, why risk it? Heady stuff.

I am not a religious girl so I have no ideology or doctrine to fall back on regarding this subject. But I have developed a healthy dose of spirituality based on various readings, my own experiences, and pure gut instinct, especially lately. I pondered all of this for a few days, re-thinking care of a special needs child, my miracle pregnancy and this latest information. Justin comes from a very anti-medicine background and is suspicious of all invasive procedures and tests that aren't deemed absolutely essential. Did this mean he was prepared to care for a special needs child? Was I? His answers were always vague, sort of wait and see type of words, which I know means it's ultimately up to me to decide.

So I decided. I knew there was no way I could terminate this baby no matter what the tests said. If this baby was supposed to be my baby, coming to me so late and right before my adoption, and she has special needs, than that is the baby I am supposed to mother. Sounds dreadfully Calvinistic and pre-determined, but I just can't deal with it any other way. I went through the same fears with adopting albeit with different illness and developmental issues, and forged ahead anyway. This was no different.

My doctor scheduled another ultrasound to give me another look-see and determine if they could find anything else out that might give me a clearer picture, as some physical traits are evident at 15 weeks. When Justin and I arrive the tech is surprised to see us as it's a few weeks early for our anatomy screening, which usually happens at 18-20 weeks. I explain our screening test results and what we're there for and she squirts the gel on my belly and we're on our way. I am in awe of the tiny creature on the screen, wiggling and swimming around inside of me. I can't take my eyes from the screen and am crushed when it's time to go. The peri-natal doctor comes in to go over the results and also asks us why we are there. Again (do these people even talk to each other?) I explain our 1 in 98 results and that we are there to try and avoid an amnio and see if there are any other physical traits to give us a clue about the Downs.

She says, "You're not 1 in 98. You're 1 in 271 for Downs. 1 in 98 is your risk for Downs based on your age. AFTER your screen your results were 1 in 271. Your risk decreased but reads as positive because it's slightly higher than a 35 year-old's risk of 1 in 294 which is basically where the line is drawn for this screening. You don't need an amnio."

Is it me? Are these little glitches in the system meant to test my mettle so to speak? Make sure I'm really a player in this thing rather than the cute cheerleader on the sidelines I always preferred to be? From the adoption to the pregnancy, it's truly uncanny the way these hurdles keep surfacing.

So after going through two weeks of angst and anxiety and ultimately resignation and acceptance I was suddenly set free again. 1 in 271?! That's a cakewalk, man! Bring it on! I suppose I could have been angry at myself for misunderstanding or at the techs and physicians that gave me this confusing news and let it go on so long without checking my records for clarification. But in the end, I was just happy to have my glow light flicker back on and also to know that I was committed to this baby and her arrival into my life regardless of her health or condition. And while I KNOW after this newest trial and everything that's gone before that there are no guarantees in life (Are you listening, Universe? I know! I get it, for Chrissake!), I do feel rather confident after the tech pointed out her labia, that B the G is a girl.

Saturday, April 5, 2008

Pools of Sorrow, Waves of Joy


I am humming along at 16 weeks, but I've had my share of ups and downs over the past 10 weeks. When you experience infertility, all you can think about is "if I could only get pregnant, if I could only conceive..." and it never really goes beyond that point of the Getting of the pregnancy. Once I Get it, the goal is met, right? I have learned however, and this should come as no surprise for me, that complications, hills and valleys, come at you from all angles after a precious few weeks of just enjoying the miracle that I am pregnant.

At about 8 weeks pregnant, I went out to dinner with our neighbors on a Friday night and came home with a big clot of blood in my underwear. It's cliched but I can only describe what felt like ice in my veins as I sat on the toilet and felt another clot slide out of me. My run as a parent was coming to an end and I was back where I started. I wept, I fell into Justin, I sat in a tight ball on the couch and ached with the pain of it.

The next day, I called the OB/Gyn on call in my practice and told her what had happened. She said unless I was bleeding heavily and cramping, wait for Monday and call the office to come in. I was not bleeding heavily and cramping. In fact the blood had changed color from normal period red, to dark, end-of-period, brown. Whatever was going to happen had either happened or was in the process of happening and a trip to an ER in Atlanta on a Saturday morning was not going to change that other than making me more miserable in a waiting room full of miserable people. I chose to stay home and waded through a truly awful weekend of disappointment, guilt, and icy veins.

On Monday, the office scheduled me for an ultrasound the following day. I am an expert by now at waiting, as everyone who reads this blog knows. I have lists of projects, books, friends. events, to occupy me in any sort of wait, especially the drawn-out, ambiguous wait that entailed getting B the G. But this wait, this stupid 24 hour wait until my appointment was by far the worst wait I've ever known. I dreaded going to the bathroom the whole weekend so I wouldn't have to see the blood on the toilet paper. In the process of avoiding that dread, I consciously or subconsciously constipated myself (is that even proper grammar? Can one constipate oneself?) so I wouldn't have to push. Bear with me here (no pun intended), I know I'm getting graphic, but I was entering the depths of despair and even if the pregnancy was over, I did not want to see the physical evidence of it gush out of me into the toilet. It would have been the end of me.

Then, sometime Monday late afternoon, I had a little breakthrough. After one of these ridiculous bathroom breaks where I try to pee, but not push (try it - impossible) I lay down in my bed and felt the sadness of it lift off of me. Not that I was happy or suddenly not depressed, I just felt comfortable. At peace with what had happened and was happening to me whatever the result. It was a huge relief, not a religious event, but just sort of an agreeement with my body and my Self to let go of this pain. I felt almost forced into the peace and it was a welcome push. I knew I would be sad but that that I would be able to handle it is the only way that I can describe it.

That is not to say I wasn't still filled with anxiety the next day as I waited in the lab for the ultrasound. But I was prepping myself while I was waiting there for the news and the follow-up care and giving myself the Mickey the Manager talk from Rocky which I never could have done over the weekend. Eye of the tiger, you can do it Rock, sort of stuff. Keep yourself going.

I had such a great ultrasound technician I'll call Cindy. I laid the events of my whole reproductive life at her feet in the five minutes before I got on the table, starting with my infertility, adoptions plans, pregnancy and bleed. The words came out of me like a rocket and she handled it like a pro and I KNOW she must have seen how my mind was racing to keep control. To keep talking so I wouldn't have to think. Eye of the tiger, Rock.

She keeps the screen carefully turned away from me and starts probing around in my uterus with the magic dildo wand of sound. She is quiet and intense and I can feel my heart pound through my back onto the table below me as I wait with one arm over my face, hiding my eyes. "I know you're dying over there," she says. "I just want to make absolutely sure before I give you the news." My heart sinks with this, but again, I feel prepped and guarded and ready, like I can handle a million blows to the head, if I can just get off this table and on with my life.

And she turns the screen toward me and points to a tiny, tiny, pulsing point of green inside a small, green comma and says "That is the heartbeat. It looks nice and strong."

I break. I feel that thing inside me that was holding me together just break apart and I can't breathe, I cant speak. I extend my hand that came from the arm over my eyes and just grab Cindy's hand and squeeze it. It's all I can do. She is crying, I am crying. I had already said good-bye to that heartbeat and there it was pounding away and making me feel like a fool for not trusting it. A happy, silly, fool.

Implantation bleeding? Something to do with my quirky uterus? I don't know why, only that it happens to many women and it took my bleeding/spotting about two and a half weeks to stop. But there's B the G up there at 15 weeks, hanging on for dear life, while she admires her pretty toes. Just like her mother.