Monday, February 27, 2012

.That test you're always talkin' about.

I've mentioned the "1st trimester screening" test enough times with both pregnancies here on the blog and with friends enough that I've had to answer the "why" question plenty and I thought that I would share the personal answer{s} that we {Cheyenne & I} have.
First off, let me say that I have friends and readers of this blog on all sides of the issue
{whether to get the screening and what to do from there} and I respect all of my friends and readers and don't want to offend anyone over what I know can be tricky waters to navigate respectfully. For that reason I will not be going into the 2nd half of the question that comes along with the screening {what do you do if it's not the result you want} on a personal level but rather my thoughts from both sides of that outcome.
So here are the questions that I've been asked and the answers that I have for them:

1. What is the 1st trimester screening?
Well, that's actually pretty easy to answer. In our case the process includes going to NW Perinatal {which, incidentally, has much better information on this that I do} and having an NT scan & blood draw. 7-10 days later the results are faxed to my OB/GYN and then I get/got a call letting me know what the results are/were.

2. What's an NT Scan?
An NT Scan is a non-invasive ultrasound {just like a regular ultrasound} that measures the nuchal folds at the back of the baby's neck. It's done at about 12 weeks and the measurements taken can give doctors an idea of the likelihood of certain chromosomal defects {trisomy 18 & down syndrome specifically}. It is not 100% accurate but is a good indicator. The office that I went to based the likelihood of a defect on the NT scan & a blood draw that I had taken right afterward along with basic information like age and family history of both Cheyenne & I.

3. What is the next step after the results are in?
Every couple is different and based on your stats, history, doctors, and other factors this can vary widely. I can't answer for you. But I can tell you that in my experience the next step would have gone one of two ways: the first is that the results come back favorably {which they did}. In that instance Cheyenne & I let out a large sigh of relief then go back for a 2nd trimester screening a month later {same NT scan & blood work} which gives an even more accurate answer. Both the 1st & 2nd trimester screenings are 100% voluntary and many people would take the good news from the 1st trimester screening & be done {that's what we did with my first pregnancy because 2nd trimester screenings weren't then available/offered}. However, Cheyenne & I feel that knowledge is power when it comes to something like a birth defect {I'll get into this in a minute} and if a 2nd trimester screening is just as non-invasive and can give a more accurate result then we think that's great.
If the results had been different and there was a high risk of a defect as indicated by the scan & blood work then our next step would have been an amniocentesis or CVS which are significantly more accurate but are also invasive and carry risks that the NT scan & blood draw simply don't have. Many women choose to go straight for an amnio or CVS based on personal health history {specifically age and family history of defects}. Neither Cheyenne or I fell into high risk categories and therefore decided not to have either of these procedures done unless the 1st trimester screening gave a reason to.

4. I don't see the point. If I would keep the baby no matter what then why would I want to spend my pregnancy worried from results that I got?
I've definitely gotten this from more than one person and I love the women that asked this of me and have no desire to offend either so I'm going to tread lightly here. Not surprisingly to anyone that knows me, I have a VERY strong opinion on this question/thought/perspective. First off, it's your life and I will not tell you what to do. However, for me {and my husband} the answer is, down syndrome {and much more severely, trisomy 18} are very real issues with a whole host of things that parents need to be prepared for. The idea of your baby being anything but 100% healthy is a bone chilling fear and no one would WANT to dwell on such a thing. I get that. But, for me, hiding your head in the sand for six months and then being hit with such a huge game changer in the delivery room is doing a huge disservice to yourself as a parent and to your child. Many many people have children with down syndrome and their lives are wonderful and their children are the apples of their eyes and they would never ever wish that their child was not a member of their family just because of d.s. - I'm not suggesting otherwise. What I am saying is that there is a wealth of resources and information out there on the subject, and that for me, if I knew 6 months in advance that my child would be born with d.s. then I would gather that knowledge and resources like a sponge. I would spend those months preparing. I would join local groups of parents with children who have d.s. and talk to them extensively about the things that they learned and that help them, both good and bad. I would read a million books. It would affect our will and would require talking with our children's beneficiaries. It would change our health and life insurance choices. It would {possibly} affect what pediatrician we chose. There are countless things big and small, scary and not, that would be affected by such a result. I also think that it's totally fair to say that if I were in that situation {and I think there are others that would agree} there would be a bit of grieving {for lack of a better word, though I want it noted, I don't like that term in this case...I just can't think of another} that would need to take place. What I mean is, as an expecting parent, I would have a lot of emotions to deal with if told that although I was expecting/hoping for a "normal" {also a term that I am loath to use} child - that is not to be. Those would be very heavy emotions, very human emotions that are okay to have and come to terms with. But emotions that I personally do not feel belong in a delivery room. In my opinion, each child born deserves to be bathed in love and held by parents who have tears of overwhelming joy and happiness - not fear and panic or worse...disappointment. I would hope that 6 months would give me/us the time to process the information, talk to people {other parents who have been there or a counselor if need be} and come to terms, so that on the child's birthday he/she would be met with the reactions that a newborn child deserves. For a perspective on this that is much more real and more beautiful than I could ever hope to write please read this.

5.  What would my other option{s} be?
First, let me reiterate, I am not a doctor and I am not YOUR doctor. There is a whole process involved in genetic screening and I would suspect that the path is quite different from couple to couple. I do know that after all is said and done you are usually left with the choices of keeping the baby, giving the child up for adoption, or terminating your pregnancy.

6. So, what would you do if you got a result that showed your baby had Down Syndrome or Trisomy 18?
I'm not going to answer that. Not here. It's a private decision with folks that feel very strongly on all sides and the point of this post is not the delve into that argument but rather to give some answers on the actual process of a 1st trimester screening for anyone that is pregnant and/or wondering about it.

If you have any other questions you can find tons of information with a few simple Google searches. If you want to ask me anything specific that I haven't addressed please feel free to comment or email me.

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