Because I want a natural birth, I'm reading hippie-granola books by midwives (Ina May's Guide to Childbirth) and other natural-birth advocates/supporters (The Birth Book); and maybe that's why they seem to be slightly anti-testing. Both books, while presenting the issue in a way that respects the reader's opinion, warn against much of the tests that OBs routinely run on pregnant women during their prenatal care, including amniocentesis.
Ina May cites the risk of miscarriage due to an amnio to be 1 in 300; Dr. Sears cites it as 1 in 200. Ina May's book was published in 2003, Dr. Sears's in 1994 (my copies, at least). Partly due to these numbers (and I'd heard even before reading the books that amnios can result in miscarriage), I told myself, and family members, that I was not going to get one. (Besides, who really wants to have a huge needle stuck in their stomach? Poking holes in my uterus and amniotic sac, and disturbing my fetus?)
Even after we had the 12-week NT screen, which showed a thick neck (3.9 mm) and no nasal bone -- soft signs of Down Syndrome -- I was still against an amnio. When the bloodwork came back not denying the original findings, I was still against it.
When the doctor first told us that the sonogram showed the possibility of a chromosomal abnormality, it was a shock. It was different and it was an unknown; I can't recall exactly what happened in what order in those days, but neither Freddy nor I were worried about the possibility of a child with Down Syndrome -- the problem where the other two types of abnormalities, which are fatal 95% of the time and my doctor, who works with the Baylor Health Care System, "a Christian ministry of healing," said even that religious hospital would recommend (and perform) an abortion.
(Dear Antis: if any of you are still lurking, I know medical facts make your heads hurt... but that doesn't mean medical facts are not true. Thank you.)
I wanted confirmation that we were NOT looking at Trisomy 13 or 18 (the almost-always fatal ones, hardly carry to term); Trisomy 21 (Down Syndrome) was not a concern/problem.
It became even less of a concern as we educated ourselves on Down Syndrome and talked to people about it. A friend of Freddy's has a niece with Down Syndrome, and her words stuck with me the most: "I want to say I'm sorry, but there really isn't anything to be sorry about."
Four weeks after the initial shock, we finally had an appointment with a geneticist. I still said I did not want to have an amnio, so part of my wondered why we were even going to talk to the geneticist (the dude who does the amnio), but my OB said this guy would do a super-duper sonogram and look for other stuff as well -- plus, if we took a blank DVD they would record the sonogram -- so we went to the appointment.
At this point, Freddy and I were almost excited about having a child with Down Syndrome (as opposed to an "average", 46-chromosome kid). Through the parents of children with DS we had met, we'd gotten a glimpse into that loving and supportive community. We were no longer afraid, now that we knew more about it and understood what it would entail. Raising a kid is not all rainbows and roses no matter what kind of kid you have; you're going to have challenges no matter what. Some of our challenges were going to be different than what we had originally anticipated, but we were okay with that.
We also realized that if anyone was going to have a child with special needs, this was the family that child should be born into. Freddy's sister just got her Master's in Special Ed, and is a Diagnostician for one of the school districts around here. My mom's a child therapist. My brother's getting his Master's in [I forget the title but it's] working with children with special medical needs -- and, interestingly, he had just finished a research paper on mothers of children with Down Syndrome. My sister is a Montessori teacher, who reminded me that Maria Montessori began her method working with children with mental retardation and other special needs (and, under her care and instruction, these "deficient" children began to out-perform the "regular" children).
We have family close by to help and support us, and on top of all the informational resources built in to our family, we have the means to afford the child's medical needs (physical, intellectual, and emotional). If anyone was going to have a child with special needs, why should it NOT be us, when you look at it that way??
When we met with the genetic consultant, she went over our test results in more detail. She said that given our sonogram and bloodwork, we had a 1 in 5 chance of having a child with Down Syndrome. We had not heard those numbers before; I think (please note that what she said and what we heard could be two totally different things -- there was a big wall of emotional static through which her words had to travel) my OB said we had a possibility of having a child with Down Syndrome, and I guess I'd assumed that was doctor-speak* for "you're having a kid with Down Syndrome."
*doctor-speak being the result of years of malpractice lawsuits and if-I-say-anything-too-definitively-I'll-get-sued-either-way-so-everything-is-iffy. Please note I am not blaming doctors for doctor-speak; that's a result of our sue-happy culture. I am not blaming lawyers, either, because lawyers don't hire themselves.
A 1 in 5 chance was different. Maybe we were making all this fuss for nothing.
1 in 5 was actually a pretty small chance. 20%. We could know for sure if we did an amnio, which we could do that same day, and the lady said that the chance of miscarriage was more like 1 in 500 to 1 in 1,500; for this practice, it was closer to 1 in 1,000 because this is what these doctors do all day, every day (the higher chances of miscarriage happen when the doctor doing the amnio is not properly trained or as experienced in doing them).
So the numbers we were given at the geneticist's office were quite different from the numbers I'd had in my head before the appointment. I had a lower chance of having a child with Down Syndrome than I'd thought, and a much lower chance of complications of miscarriage from doing the amnio.
When we had the sonogram (where we forgot to give the doctor the blank DVD so we didn't get it recorded... but we're going for our follow-up on Tuesday), the doctor said everything looked like it was developing at the "normal" rate, all body parts were proportional, etc. (He also pointed out all the fetus's organs, and said they were all working well... which I'm glad he said, because I couldn't see anything he pointed at. I saw the heart, because it was blinking. Everything else? No clue... that's why I'm not a doctor.)
According to what the doctor saw in the super-duper sonogram, that 1-in-5 number seemed to be leaning toward the other 4 instead of the 1.
I hate not knowing. Not knowing the sex of the baby for those 16 weeks (12, really, since the first four I didn't even know I was pregnant yet) had been bugging me enough. I like to make plans, I like to know so I can daydream about how it's going to be.
I didn't want to go around making plans for a special needs child, tell people that we might have a child with Down Syndrome, only to find out in October that nope, just kidding! I already felt like a poser because of the few people we had told and talked to about it. Like we were walking around telling this story to get attention and sympathy when we didn't even deserve it.
(And, if I was going to have a child with special needs, I was going to go around making plans. This is why we did the NT scan to begin with -- to be prepared. If we were going to have a child with Down Syndrome, I wanted to know all I could about it. I wanted to find a pediatrician who knew all about it as well. I wanted to have physical therapy scheduled from the beginning, and anything else I might need to set up for my child. I was making plans to get my blasted last four credits for my blasted Master's so I could quit my full-time job and teach part-time at one of the local colleges, so Freddy and I could work out a schedule where one of us was home with the baby and we wouldn't need daycare, but would still have a way to, like, buy food and pay the mortgage and all.)
So we did the amnio.
It took two minutes, and didn't hurt any more than drawing blood, really. Even when Freddy made me laugh WHILE THE NEEDLE WAS IN MY STOMACH.
I made a point to look at Freddy, you know, for support (in case it hurt). The doctor said that it usually hurt the father more than the mom, because the father was the one looking at the needle. Which is why I thought Freddy would look AT ME, but no. He looked at the needle, fascinated... and started making faces. Like, "ZOMG, that's HUGE!" faces. Which, if you know Freddy, he was likely to do before he even saw the needle, just to mess with me.
"It looks like a beer!"
"What?"
"No, look! It looks like he's drawing a beer! It even has a head on it and everything! Just like it's coming from a tap!"
Well, if you're making me laugh while the poor doctor tries to draw some amniotic fluid from my stomach without poking the fetus, then you can expect the fluid to be a little shaken up and bubbly, I guess.
The one surprise I had when they did the procedure was that I had to rest the next 24 hours -- as in, bed rest. No going to work the next day (even though I work in an office, relaxed setting, and I sit all day). The nurse and doctor told me before they did the procedure, and they were very accommodating about letting me come back and do it another day, when I had time to arrange for time off, etc., but I wanted to get it done then (impatient? Who, me??) and I had already taken that day off work so might as well do it.
But I was surprised that I had not heard that before; that an amnio is a two-day procedure (you get it done, you rest the whole next day). My books didn't mention it, and my OB hadn't, either (not that I'd asked about the details, but still). I'm lucky that I have a flexible job and an understanding boss, so I could call in and tell her I'd be out the next day, but I realize many women do not have that option.
If I were still in the job I had last year, teaching public school, I would not really have had that option. Leaving lesson plans for being gone one day (for the appointment) would have been hassle enough -- calling my department chair to tell her I was going to be gone ANOTHER day, and no, I didn't have lessons ready? Plus, when I went back to work at this job, I had the luxury to sit all day, and take it easy. In the classroom, I would have been expected to stand for most of every class period, walking around monitoring the students, and stand in the hallway during each passing period (where kids running in the hall and playing around with their friends can easily bump into you).
What if I worked an hourly job, in retail or food service? A) That would be TWO days of no work = no pay, and B) that's a huge amount of physical strain, when the care sheet the doctor gave me said to take it easy, no exercise, for two weeks after the procedure.
Sure, I know an amnio isn't a "necessary" procedure by the strictest definition, but it was necessary for me. I had to know what I had to prepare for. No, I was not going to abort if I found out my child was going to have Down Syndrome (and by the time we met with the geneticist we had pretty much ruled out Trisomy 13 and 18; my OB said she would have seen other signs/physical deformities if the fetus had one of those abnormalities, so that was no longer an issue), but I needed to know what to prepare for. How much my life was going to change. Other pregnant people deserve that same opportunity.
They poked me on a Tuesday, and by Friday afternoon they had the preliminary results. 46 chromosomes, two of each, no extras (except for the last one; that wasn't two of the same, it was one X and one Y).
Freddy and I both felt that a part of us was disappointed with this news. We were looking forward to the challenges, and joys, unique to having a child with Down Syndrome (and I no longer have as good an excuse to stay home, so looks like I'll still be working full-time after Troy Emmitt* arrives).
*I wanted to TWILIGHT the names and call him Emmittroy, WHICH IS SO MUCH BETTER DON'T YOU THINK??? but Freddy said no.
I am glad we went through this experience. I know there are a bazillion things that could still go "wrong" with the pregnancy, and a bazillion things that could still make Troy Emmitt a child with special needs. Now, Freddy and I know we can handle it, and we found out we can handle it before post-partum depression and the stress of living with a newborn set in. If we do find out, at birth or shortly thereafter, that Troy Emmitt has special needs, we know we can cope and we don't have to go through the same shock period we already went through. (It's still going to be a shock, I'm sure, but we know we can get through it).
Also, I'm 32 years old, will be 33 when Troy Emmitt arrives. Just two short years away from the magical age of 35, when BAD THINGS happen more regularly to pregnant women. I want at least a second child. Before all of this happened, I was a little scared of trying to get pregnant again so "old," because I was afraid of the unknowns and thought that "different" was "BAD." Now I'm not scared, because I feel I can handle it, and I know Freddy, and the rest of our families, can.
My books warn against testing because the results can often be false positives (like mine was), and this causes unnecessary stress. I had a false positive, and Freddy and I did go through a period of stress, but I don't regret it. I'm glad we did the testing, because now I know more than I did before -- not so much about the fetus/future baby, but about myself, and about Freddy.
