I’m Removing My Prenatal Testing Halo.Posted: June 19, 2013 Filed under: Down syndrome, emotional stuff, personal growth | Tags: Amniocentesis, CVS, Down syndrome, miscarriage, Mother, pregnancy, Prenatal diagnosis 53 Comments
I have had my moments of self-righteous judgement. Shocking, I know. I’ve strapped on my righteous halo in secret, just for comfort.
In the early weeks after discovering LP has Trisomy 21 (Down syndrome), I spent time pontificating on life and riding some emotional waves. During that time, for a brief moment, despite all my reservations on prenatal testing, I wished we hadn’t opted out. For a brief moment, I thought we should have terminated.
For that brief moment, I felt a lifetime of guilt.
If my love had been more true, pure, strong, I would have never thought those things, right? How could I think that awful thought while my baby lay in bed beside me? I was ashamed to call myself a mother.
Then, the pendulum swung the other way, and I felt a bit righteous. I was raw and scared. I needed to reaffirm my good (or at least not failed) motherhood. I needed to reaffirm my love for my baby because I was terrified that he sensed my moment of doubt. The world was telling me my baby wasn’t worth it, and for a moment, I had let myself believe that lie. To make sure everyone knew I’d come around, I strapped on my we-never-tested-because-we-would-never-terminate-halo and plunged ahead.
Let me tell you now, that was utter nonsense. I apologize. Deeply. I have removed my halo.
I want to say some things to the women out there facing the difficult choices that line the road to motherhood. Yes, to women. In our still very patriarchal society, women bear an inordinate amount of shame and judgement for their reproductive choices. So yes, I am talking to you, sisters.
To the mother who participated in prenatal testing, I stand by your choice to seek information. Maybe you just needed to know, to prepare. Maybe your doctor simply stated it was a matter of course. Maybe you even opted to get an amniocentesis or CVS test. I stand by you, because I refuse to judge the reasons behind your to need a for a more certain picture of the baby you carried in your body.
To the mother who lost her baby after choosing CVS or amniocentesis, I stand by the best decision you could have made at the time. I can’t know how it feels, but I can imagine how it must cut you to hear another person glibly talk about those tests without knowing the loss you’ve experienced. I refuse to judge the reasons you decided to do those tests.
To the mother who never considered termination, I stand by your conviction and certainty. I don’t know why termination was never an option for you. Maybe infertility. Maybe your faith. Maybe because you simply couldn’t or wouldn’t. I refuse to minimize you in any way; unwavering conviction is a powerful thing.
To the mother who did consider termination after getting prenatal test results, I stand by your private, personal journey. Maybe you were scared. Maybe you had no support. Maybe you simply questioned the road ahead. I refuse to judge the inner workings of your choices.
To the mother who terminated her pregnancy after getting prenatal test results, I stand by you simply as another woman and a mother. It pains me to think of my own baby being aborted, but he wasn’t, and I will not impose my feelings on you. I have not walked in your shoes. I don’t know what you were told about your baby, nor do I know your baby’s prognosis. I don’t know the circumstances of your life. I refuse to judge you and I will not shame you.
To myself, the one who declined all testing, said she would never terminate and regretted my decision in a sad moment in time, I forgive you. I reaffirm my belief to go on with pregnancy without the information given through prenatal testing. I know now that neither my prenatal testing choices nor my doubts afterwards are indicators of my strength as a mother.
To my sisters, we may not always agree, but I refuse to judge you. Let’s all remove our halos. We have all struggled and we are all imperfect beings. We can stand together.
I want to hug you right now. :) This is what I have been trying to write about for days and it has just been…stuck. xo
Hugs back! <3 <3 <3
I love this post. I have been caught too many times in the “how could you be pro choice AND be a mother to a child with Ds” conversation. We chose to have an amnio after heart defects were discovered, I needed to know. As far as judging others for their choices…Not my body, not my choice. I believe that we all do what we need to do for ourselves and our families (even if it doesn’t always feel that way). xo
Thank you for sharing Stacey. <3
Yes! I feel the same way, Stacey (and am consistently shocked at the intrusive questions and assumptions people think they can make–and say–to me because my daughter has DS). I often feel like I am in this silent minority but try to reign in judgment as beautifully as jisun has done here. Great post–until we walk in someone else’s shoes, who are we to judge?! Wonderfully put.
Perfect, and my feelings exactly. A proud pro choice mother of a child with down syndrome.
God you’re awesome.
Well done! Disagreement without judgment is a fine tightrope to walk. So much of our identity is wrapped up in being right. It seems as soon as you shed one layer of judgment another creeps up behind it.
Simply love this!
This was simply beautiful. Thanks for writing this!
This is absolutely awesome! We NEEDED to know…I don’t know why, but it was a need. We were afraid. I was certain yet uncertain all at the same time about what the results would mean. We actually talked about how to move forward. It makes me absolutely ill sometimes now to think about that. I can’t imagine my world without Kennedy.
I have come to learn that judging others is a pretty much a waste of energy. Everyone’s life is different and their own.
I have yet to learn not to judge myself. But you are an inspiration to me.
Thank you for being so raw and so honest.
Thank you for those too kind words. We’re all doing our best. And yes, I hear this over and over again from mothers, that they needed to know. Maybe you don’t really need to know why, just that you were honest enough to recognize you needed it, you know?
Excellent! I’ve learned we never truly know everything that goes into someone’s decision or experience. It can be hard to think as you’ve written, but it would be great if everyone could…or at least try.
Yes, all we can do is try. I’m trying a little harder lately, because I’ve been realizing how much judgement is out there preventing us from really moving forward as a society. I can’t say it is easy though; I’m a work in progress. :)
Well said my friend. My thoughts exactly. ;)
I had prenatal testing all the way. Because of a complicated pregnancy, I chose not to have an amnio because of the risks, but no other tests showed that we were having a child with Down’s Syndrome. Afterward, I had two other children and had prenatal testing for preparation purposes. I have personal religious beliefs on abortion, but do not believe on forcing others into my decision guidelines. You spoke eloquently on the experience from all angles. Thank you.
Thank you for sharing, Mary Beth. I really want our community’s discussion of prenatal testing to move beyond assuming things about the choices women make. I have met so many women who felt judged for undergoing testing because others made assumptions about their motivations. Everyone has such a personal road.
I’m not sure how I feel about this post Jisun. But I am glad you wrote it if it helped you work through some of your own feelings.
You’re welcome to share your thoughts Elicia. I think discussion is a good thing, and I aim to make this blog a place where that can happen.
I guess I just have mixed feelings about it. I at the same time regret and do not regret not having done any prenatal testing beyond ultrasounds. I am sad that Daniel’s early days are more sad than happy memories than me. I would like to think that had I known, I would have had more joy in those early early newborn days that I can’t get back. But there is also a chance, if I had known, that I could have made the biggest, most horrible mistake. I shudder to think about it. And I think that, like abortion based on the sex of the baby, abortion for reasons of disability does a disservice to those living with disabilities and causes the majority of the world to see their lives as optional. Hence we get incidents like what happened to poor Ethan Saylor. I don’t know. It is such a hard thing.
I think it is hard to look back and know what could have been. I also shudder to think of what would have happened if we had done testing because it very much feels like I would have considered terminating the very alive, very beautiful baby who is already here. But that didn’t happen, and for me, conjecturing on what might have been feels somewhat like trying to operate in a false reality.
I agree about how our society sees the lives of people with disability as optional. I want to be part of what changes that, but I feel that the judgement and shame surrounding women’s reproductive choices is counter to that goal. This post wasn’t so much a statement on what my vision of an ideal world would be regarding disability, abortion, and human rights (not that I don’t have opinions on that, I do!). It was more about a simple act of empathy for the sometimes impossible choices that we women face.
Although I am not a mom of special needs kids, I am a mom of three. I personally chose prenatal testing as an older mom because my doctor pointed out that if specialists were needed at the birth, we’d be prepared.
But the idea of parents supporting each other without judgement should extend all the way through our educational choices (Private preschool? Public? Homeschooling? Public schooling? Charter Schooling?), our medical choices (inoculations? some? none?), our free time choices (TV? No screens? eBooks?).
I think that we can all become so insecure that we feel a need to reaffirm our own choices by putting down others’.
Great post, thank you for your courage and honesty!
Yes, so true, I think we should all try to judge less, discuss more, and meet on common ground. I’m trying. Thank you for the kind words. :)
You have confused judging a wrongful act with judging a person’s action. Targeting the Down syndrome community for selective abortion is morally wrong as it is discrimination and eugenics against our community. So, it would be a morally right action for disability advocates to condemn (or judge, using your term) such a wrong action. All civilised societies have moral boundaries around right and wrong actions.
It would be morally wrong to condemn an individual who proceeds with taking the life of their own child because it has Down syndrome. The response would one of compassion for the harm to the mother, father and the unborn child.
Mike, I can only speak for my own sense of morality, but I very much condemn eugenics, and yes, that is very different than condemning a woman for doing the best she knew to do at the time. I do not believe you and I disagree on the difference between those two issues. I think you may be missing the goal of my post. I wrote it to stand by every woman who has ever made a decision about prenatal testing, no matter what their choices or outcomes. I hope to contribute to a society that can judge and shame women less, period. This has nothing to do with my opinions on what should have been in an ideal world, but simply that there is no positive benefit from judging and casting shame onto others without knowing their circumstances.
Beautifully stated, and thank you. I needed to ‘hear’ this. :)
Thank you, Lizette. I can’t tell you how much it means to me to read a woman’s comment saying that this post helped in some small way. :)
[…] I’m Removing My Prenatal Testing Halo. […]
hello, i just came upon your blog from a link a friend posted. i am also korean american, and have a son with DS. i deeply appreciate your post regarding he amnio. the reason i chose it is because after the abnormal ultrasound, i wanted a more definitive understanding of what might be going on, and to make sure we were as prepared as possible. because we got the prenatal diagnosis of DS, my doctor recommended a specialized ultrasound at 30 weeks because of a higher risk of placental breakdown. lo and behold, that’s exactly what the ultrasound discovered. my son likely would have died in utero if we had not known to take precautions. there were definitely people who were confused about our decision to have an amnio, and ultimately my husband and i had to remain confident in our own reasons. i wish people could have demonstrated the open-minded nature of your post. thank you for sharing.
Millie, you don’t know how glad I am that you shared your story. Thank you so much for your kind words. I’m glad to have another Korean mama in the community!
Thank you for your thoughtful reflections. I started my midwifery career in 1972, and have always supported informed choice for childbearing women. It has been interesting to me however that in my practice, women who already had downs syndrome children always chose prenatal testing, and the one woman I knew who found out through testing that she was carrying a second downs child (the first she was mothering, and had not had antenatal testing) chose to terminate.
Hard stuff. I have to support these choices of women, I haven’t experienced their lives.
Thank you for sharing your experience, Marion. In my experience talking to mothers who already have children with Ds, most who do prenatal testing say they do so because they want to be prepared for any medical issues. Of course, I can’t presume to know the complicated calculus that comes with every family’s unique situation, and I’d guess not many families find themselves pregnant with a second child with Ds.
I don’t know what we’d do in terms of testing if we ever had another child, but I sure as hell wouldn’t want anyone assuming anything about me because of it.
Marion I am a little disturbed that you are sharing this personal information about your patients on the internet. There aren’t that many people, period, who have children with Down syndrome and it is probably not that hard for others to guess who your patients who chose prenatal testing or tx for a second Ds diagnosis might be. As a mother of a child with Ds who will probably do some form of prenatal testing when I have my next child, I am surprised and wary. I don’t want my midwife to discuss me or my children on the internet like this. And please look up “person first language.”
Wow you writing is so strong – so full of human truth. Refreshing to read. Thank you
Thank you, Sally. :)
This is beautiful, Jinsun. Thank you so much for writing it,
Thank you, too, Katie. :) This post has been near and dear to my heart.
This is great…thank you!
wow! powerful stuff! I feel like since I have had my son there is so much to think about and this is definitely one topic. I was brought up in a Christian home and always thought I was pro life, the funny thing is when you are sitting in the doctor’s office and they tell you something may be wrong with your baby, you see things through a whole different set of lenses! I still consider myself pro life but have come a long way in my views. I believe you never can know anyone else’s circumstances and what you would do if you were put in them. I will say that I kind of cringe now when I see a pro life bumper sticker because I wonder if they have ever sat in that small lonely room with a choice to make, it sucks! Then you can talk to me about pro life! Don’t get me wrong I am extremely glad that I didn’t have further testing done because I don’t know what I would have done, which also makes me cringe. I do however hope that now that we have our little guy that others will see it would have been a HUGE mistake to abort him and those like him! I have really learned since my son’s birth to hear people out instead of judging, some stories are absolutely unbelievable!
As always thanks for making me think!
We did not have prenatal testing with any of our children until our last pregnancy. When the fetal cardiologist told us that 50% of babies with this heart defect also had Own Syndrome, we chose to have amnio to find out if we also had that diagnosis. Our OB told us that it would be better to know in advance, to be prepared for the birth medically and emotionally. It was a tough decision – I wanted to HOPE – but we decided given the medical issues we knew we were facing, we should know if this was going to be an issue too.
Well, we found out and it sucked. There’s never a good time to find out tough news about your children. And … We weren’t going to tell anyone, but everyone it seemed when they found out about the baby’s heart, told us something along the lines that doctors could be wrong because doctors had told them that their baby would have Down syndrome and the baby did not. So we ended up telling everyone about the diagnosis, too.
I Am SO GLAD we knew in advance. For every sad moment we had before our girls were born, we had a wonderful birth experience and a tremendous outreach from all those who knew. because we knew in advance, I think friends and family were able to celebrate their birth without reservation. Because we knew in advance, we could celebrate the birth, not worry about the diagnosis.
I hear this over and over again from women who chose to do testing, that it helped give information so that they could prepare for their baby. I’m so glad you shared your experience here, thank you for the comment!
We did no testing and I wish more than anything we would have so my daughter’s birth would have been a happy time. My concern about abortion, prenatal testing, etc, is that some assumptions have to be made. First, that having a child without a disability means life will be carefree and without challenges. I see you have two other children, so you know this is not true. In fact, I have watched far too many of my friends lose their beautiful, perfectly normal babies to drugs, violence or disease. Secondly, our medical community does a pitiful job of explaining Down syndrome. I thought it might be getting better until my niece became an OB/GYN, and began telling the parents what she had learned in medical school instead of what she saw with her own eyes. She tells me, “you are the exception.” Finally, knowing the abortion rate is relatively high for families that find out their fetus has DS, the name of the blood test, MaterniT21, is highly offensive.Given no other disease is mentioned in the name, there has to be a reason to do that and I think i know what it is. I too sat there while they checked my babies heart that day 14 years ago, and for a brief moment, wished my baby wouldn’t make it. But, ike you, eventually i fell in love when I learned for myself that what I thought DS was, simply was not true.
Thank you for sharing your story, Valerie. I completely agree, the assumptions and misinformation that we all must wade through are the hardest part about the diagnosis. I only wish that we could help the world make that transition, regardless of whether or not they had a child with T21. Because if that were true, getting a diagnosis would be just a bit of information. Nothing more, nothing less.
I want to share this post with anyone and everyone I’ve ever met. It was so beautifully written and raw and truthful – I have tears streaming down my face. We did the CVS testing (as I was 37 when I got pregnant) because we just wanted to know. My child does not have downs or any other genetic condition – and is about to turn 1. Your post struck me to the core though because we are going to try to get pregnant again at the end of this year – I will be 39. I’m scared, hopeful, optimistic, and keep telling myself that we will do the testing and the result won’t matter. But there are dark and scary thoughts and if I’m brutally honest with myself I have to say I have no idea what we will do and how we will face it if we have to.
Thank you for your blog. Your family is so beautiful – I love your little man already and I will continue to read your blog as I feel it will inform me and support me and help us in our journey.
I’m so glad you say you’ll read more, not because I think my blog is the cat’s meow (there are so many amazing bloggers out there), but because it means that you’re reading and learning. I’m shocked at how little people know about the actual genetic conditions that prenatal testing is supposed to reveal.
Yes, I can’t lie and say it wasn’t scary. But… it turned out that being scared was a good thing for me. I had to face that fear and really question it. Really question why I was scared, the values and assumptions behind why I was scared, what was real and what was perception. I’m still fairly new to it all, but one thing I can say is that what I thought about the world before has changed in ways I never predicted. In good ways. Congratulations on your little one, and I’m sure the path ahead will be beautiful, hard, and worth it, no matter what. <3
I love this post, and your honesty. I thought that my life was over when I got pregnant with my fourth child. I didnt have the tests, would not have aborted, but …. for months just wished that the pregnancy would go away, that my baby would die. He didnt, thank God, and when he was born, that was when my life really started ie that was when I started to live my life in the way that I wanted to.
Thank you for commenting. In a funny way, I feel the same about my life after having my son with Down syndrome. Cheers to unexpected motherhood. :)
We fear things so much and when they happen, they bring so much growth and other good stuff with them. My 15 year old daughter said a sweet thing the other day. She said she hopes she has a disabled child because it would be better that it should come to her than to someone who would not look after it properly. She is very artistic and musical, and surprised us all recently by announcing she wants to become a doctor.
I couldn’t agree more about things we fear.
Your daughter sounds like she will make a wonderful, compassionate doctor. We need more of those!
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