Down Syndrome

Get ready: i'm fixinta try and write about everything at once...

As we all know, Alison and i are expecting this baby, right? So as not to keep you worried--what with that title and all--i'll just go ahead and say, No, it appears that little Biffle Piepmeier does not have Down Syndrome. Or, to put it another way, we found out today there is only 1 chance in 148 chances that little Biffle P. does have Down Syndrome. According to the medical industry this is a relatively high risk and we should therefore be relatively scared.

Here's the first of many things i'd like to spit out in this post: Why, oh Why did we ever bother to take that first blood test? Alison didn't want to, and i have a spectacular history of failing them. Why did we do it then? Well, i think we did it because we sat there in that damn doctor's office and thought there was a chance that test would give us some clarity. It didn't. We kind of knew, but did not give enough credence to our recognition, that almost no amount of clarity would be good enough.

Here's something else i'd like to squeeze in here: (As the professionals point out) Alison, at 35 years of age and before "risk adjustment," has a 1 in 263 risk of having a baby with Down Syndrome. The amniocentesis, that offers us 99.7% accuracy of determining B. P.'s chance of having Down Syndrome actually comes with a 1 in 100 chance of inducing miscarriage.

And here's some more: No, i do not have statistics or hard science at my finger tips, but i'm thinking there are literally hundreds of things that can go wrong to a pregnancy and brand new people. Autism, cancer, blindness, deafness, terminal hairlessness, juvenile onset diabetes, car accidents, and on and on...why then this huge concern over Down Syndrome? Well, what i'm figuring is they developed a pretty good test for it. You see, no one's said Boo! yet to us about cerebral palsy, but since no good test has been developed for that yet, there's no real profit in it, so i guess they just don't worry about it so much.

Still more: Alison and i went ahead and took that test because i think we both recognize the part within us that wants us one them smart babies: you know, a baby that speaks french and is disdainful of their kindergarten teacher for being pedantic. We have been so automatically set on that notion i reckon we just thought we wouldn't want a baby that was "compromised" in any way. Although we haven't been cavalier about abortion, i think Baxter Sez readers know we're not adverse to terminating a pregnancy because it wasn't the right time, because we weren't ready yet to create that big space for someone else in our lives. But now....now, what if we've come to a place where we have made that space and suddenly things weren't looking right? Would we get rid of this one, too? Hell, here we are wanting a smart baby and this one goes and fails a test before it's even born!

Now, here's where i'm really getting to it: I love two Alisons. One of these Alisons loves power and control. No amount of security for that Alison would be enough. The other one is the diametrically opposed Alison that is extremely courageous, willing to take chances and trust the outcome even though it isn't in her hands. Now, minus the courageousness and the thoughtful part about "trusting the outcome", i was the one largely responsible for the collision of faith and recklessness in Alison's life for years. She handled the power and control part, i did stupid shit and sometimes got away with it. This balance has served us well sometimes, but sometimes--and particularly in the case of this baby--it could have been a real detriment.

I've learned some weird stuff in my life: I've learned that when i really really have to, i can sit quietly and wait for long periods of time. I've learned that disappointment ain't no thang but a chicken wang. Something else that experience has taught me is that all-things-babies is an invitation to chaos. Now, i'm alright with that, but i was worried about Alison. At the drop of any hat, Power and Control Alison could have stepped in and ...well, for all the good it's served her, i just don't think it would have worked this time around. I'd been wary of P and C Alison since negotiations concerning propagation commenced. It was one of my biggest misgivings actually. And then, when we did get pregnant and no big research projects about how to have the world's best pregnancy emerged, i began to think that Mama Alison was going to be one and the same as courageous-and-faith-based-Alison. ...and then Down Syndrome came along.

And finally, the real deal: Tonight we sat and ate burgers at a place downtown. They were pretty good, but i'm not gonna tell you where we were because it's where tourists go and i think it's shameful to go where the tourists are. Anyway, we sat and ate...and cried. We talked fervently about what this ridiculously small chance for having a baby with Down Syndrome meant to us. We talked about the culture wars in America and how it was just like a couple of lefty smarty-pants like ourselves to get so pragmatic and scared about something so out of our control. And we decided that we didn't want to be that way. We didn't want to be filled with anxious expectations like some drooling sports-happy dad at his 7 year old's t-ball game. We decided what we should have decided all along, what several of our wiser friends had already decided before us: that whether little B. Piep passes every test is just not that important. Love is important. Being open to learning what someone else has to teach you is important. Letting go of expectations for a particular outcome in exchange for the wisdom gained by simple acceptance is important.

I'm hoping we're through with those tests now.


JanetLee said...

At 35, the risk for Down Syndrome is really low. Let's put it this way, I've been been watching babies being born for over 10 years and have only seen 2 Down Syndrome babies.

OB's offer the test to "older" mother's because the literature tells them they should. (And 35 isn't really old these days for a first birth.)

One of the reasons is that Down Syndrome babies can have heart defects and it can be more efficient to know that ahead of time so consultations with neonatal cardiologists can be set up in advance.

There are so many things that can go wrong, it is amazing that babies come out okay at all. The odds are way in your favor.

Enjoy the process!

Heather said...

Awesome post, Biffle. Welcome to parenthood. I'm sure you've seen the rollercoaster scene of the Steve Martin movie, but it fits so well.

Alison said...

Heather and Janetlee--thanks for these encouraging thoughts. It was really reassuring to wake up this morning and read them first thing.

Syd said...

Biffle and Alison, I was born when my mother was 41. Most people think that I'm fairly normal and I did score 99% on my verbal GRE.

Anyway, there weren't any tests when I was born. I doubt that my mother and father ever considered that I might not be "quite right". They just trusted that all would be okay.

You both are highly intelligent and courageous people. I think that regardless of what happens in the development and life of little B.P. , you both will deal with it. As my father used to say, "Don't borrow trouble."

There are lots of challenges in this life. And it's not the birth but the life that is important. I know that B.P. will have a lot of love and a life in which both parents are invested. No one could ask for much more.

Japee said...

My mother was married at 32 and then had 8 healthy children. I don't know why, but she did.

I've helped with thousands of births and although there are heartbreaking cases, almost all babies are healthy. I wished we stressed healthy lifestyles over testing for every possible problem. All the best to you.

Quiche said...

I agree with all of the above posters- it is amazing that babies come out okay at all, on the other hand, humans are amazingly resilient, defy and overcome the most insurmountable odds just to be here. As Syd said, our generation didn't have those tests available, and I'll add too that they did not have ultrasounds, and quite often scheduled (literally penciled in) births.

With much love and patience, you three will make your own unique path. All will be well. I'm sending you three my positive energy and best wishes.

Infinite blessings!

PS. 3-6 month clothes to start, unless your baby is a preemie, otherwise Newborn size either won't fit, or baby will grow out of in a week, (or so has been my experience with my first- 8 lbs 8 oz) (:

Conseula said...

If only the tests were over. People say the hardest part of parenting is exhaustion and the loss of freedoms (you can't sleep in, you can't stay out late, you watch too much children's television), but I think the hardest part is exactly this: summoning the strength and courage to welcome and love the child the universe gives you, exactly the way that kid comes to you, and always always always worrying that you're doing right by that kid.

And let me add that I, too, have been surprised that no great baby research project has yet emerged.

hippiemidwife said...

I wish I had something more profoundly comforting to say, but it would only validate what you already know. I find the triple screen test in general to be a very poor screening tool.

I was thinking about your words regarding how the medical industry places a different value on the actual risk number than the parent. Medical professionals do approach the concept of risk with an extra variable. In addition to the genuine concern for the patient outcome, that number also represents a malpractice risk. I don't in any way mean to imply that providers don't care about their patients wellbeing, but it is impossible for a practitioner in America today to work independent of the litigious society we live in, and there is no bigger hot bed of medical malpractice than in the realm of obstetrics. It's intrinsic that the "1 in 148" weighs differently in the mind of the doctor. For them, not only is it a 1 in 148 chance that their patient will deliver a baby with Down's, but a 1 in 148 chance that they were at risk for a "wrongful life" lawsuit if they had not counseled you to have the test.

So I was mulling this over and thinking about how the standards for prenatal testing are issued by the trade union that represents the interests of the OBGYN profession (including malpractice issues) in addition to best practice for promoting optimal outcomes. I was thinking about how even I tend to toe the line in making sure that all the routine testing gets offered and declinations are carefully documented in order to reduce my liability. But then I was reminded that there is one and only one routine test that I generally don't even bother to discuss, which is the triple screen/Down's syndrome blood testing.

Sky Farmers Market said...

I should start by saying that I am pro-life and that I have been following your blog since reading your skirt article on a pro-life site.
Differences aside, I wanted to tell you that your recent post on Down Syndrome was very real and moving. Your honesty on the very powerful emotions attached to the health, appearance and intelligence of our children is a reminder of what all parents go through before the birth of a child.
I had to take coumadin during my first pregnancy and it can cause birth defects. The risk was low but dr.'s made sure to remind me numerous times. I am sure to keep theirselves out of a law suit.
My son was born completely healthy, but I had many of the same concerns, doubts and feelings you have described.

Tricia said...

Hello. I randomly found your pos because I have a DS Google search regularly sent to my inbox.

I wanted to say this was a lovely post and brought back a lot of the same feelings my hubsand and I had a couple years ago when we were presented with high risk for DS. We too declined amnio/cvs and have always sort of wondered why we bothered with the other presreening testing to begin with.

In our case, we did have a beautiful daughter who has Down syndrome. I just wanted to say, while I hope your baby is born as healthy as any baby can be...if s/he is born with DS, you will love him/her no less fiercely.

Best to you.

Biffle said...

thanks for the comments everybody. And especially you, Sky Farmers and Tricia.

I think when i write a lot of the more serious posts on here, i've unintentionally doing a couple of things: one, i'm pretending and practicing to be a better person that i really am. And second, i'm hoping people i've never met read those posts and...well, i hope they see things in a new way, or find things to be hopeful about, or are reminded that they world is a good place...you know.

Anyway, i'm trying to say it was very nice getting both of your commments.

Anonymous said...

This blog entry reminds me of a journey of love. Things can happen to the people we love in the womb,or any stage of life. If love demanded perfection, we would all be standing in the cold.

I will be praying for a safe delivery and I think your son has a terrific father and mother.
Be Not Afraid. Children brings us out of ourselves so we can grow.

Daniel said...

That's the problem with these serious WB posts: Once he's done talking there's almost nothing left to say, and you kinda don't want to break the spell by chiming in with the usual, "Hey, did you hear the one about the ..."

BTW, I don't have an e-mail for y'all. Shoot me one? xark@bellsouth.net

Anonymous said...

I loved this post.

I remember right before my first child was born, I sat and looked at the list of possible birth defects in the What to Expect book. I had a mental checklist; "I could handle that one,umm okay - that one, too, -ooh, that one might be tough..."

Anyhow a coupleof weeks after my baby was born, we noticed a strawberry hemangioma developing. It eventually swelled to the size of a cherry red golf ball on her neck. These birthmarks eventually go away, and it's barely even noticed now. But while she was a baby, I couldn't believe all of the appalling comments I got about my beautiful sweet little baby.

The thing is, you realize very shortly that you love this child fiercly and it wouldn't matter if they were green with purple spots or if they can't do calculus at the age of five. It doesn't matter because you're their parent and you love them.

frida said...

a totally moving piece. Thanks so much.

Anonymous said...

I'm just now reading this blog. I wanted to clarify one thing that you mentioned in your post here. You stated that the stats for risks of miscarriage after amniocentesis is 1 in 100. This is absolutely incorrect, and was even in 2008 when this post was written. You can Google "risks of miscarriage after amniocentesis" and come up with various stats, but NONE of them are as low as 1 in 100. The actual risks vary from doctor to doctor, hospital to hospital, and can also be dependent upon what the mother does after her amnio. When I had my amnio, my doctor's stats were 1 in 250. The only reason his weren't higher is because he had one patient who the very day she had her amnio done, went out dancing and lost the pg due to over-exertion directly following the amnio. Granted, that is rare that someone does that, and it does happen that a baby is lost due to an improper amnio, but the stats are most definitely NOT as low as 1 in 100! Please post ACCURATE facts - your stats are misleading and inaccurate. Here is just one example of CORRECT amnio stats: " Miscarriage — Studies have shown that women who have amniocentesis have a small increased risk of miscarriage. Fortunately, this complication is rare. The risk of miscarriage related to amniocentesis is estimated to be 1 in 300 to 500 (0.2 to 0.3 percent)" via http://www.uptodate.com/contents/patient-information-amniocentesis-beyond-the-basics or here: http://www.americanpregnancy.org/prenataltesting/amniocentesis.html "Miscarriage is the primary risk related to amniocentesis. The risk of miscarriage ranges from 1 in 400 to 1 in 200. In facilities where amniocentesis is performed regularly, the rates are closer to 1 in 400. Miscarriages can occur because of infection in the uterus, the water breaks or labor is induced prematurely." SO please, get your facts straight before you post inaccurate information!