For those of you contemplating prenatal screenings that aim to detect birth defects, and specifically Down syndrome, I wanted to share something I wrote on my blog not long ago, which was also published on a disability site. Please know it's not a judgment, it's just another perspective to consider:
What It's Like
A little over three years ago, my sixth baby was born into loving hands, a planned home birth. I had, of course, spent the previous nine months imagining what this newest member of our family was going to be like, and dreaming the dreams for him that mothers tend to dream for their babies. Within the first day after his birth, it became clear that something was wrong, and after a frantic drive to the ER, our tiny newborn was admitted to the NICU where he would undergo major surgery at a day and a half old to correct the intestinal atresia he was born with. It was while Finn was in the NICU that we learned that he has Down syndrome.
Suddenly it felt as if all the dreams I had dreamed for him were shattered. I was afraid and angry – what did this mean? What would it mean for our family? What did I do to deserve this? How bad was it going to be? I was overcome by a grief so deep, it shook me to my core. There wasn’t a moment I didn’t love my new baby, and I found myself feeling a fierce protectiveness over him – but I felt lost and completely ill-equipped to be one of those mothers – a mother of a child with special needs. I was just a regular person, often frazzled and short on patience with my “typical” kids – certainly not the special kind of parent that everyone was suddenly assuring me I must be to have been given this special child.
I’ve traveled quite a long way since those early months of grief and fear and sorrow. Finn has grown into a mischievous toddler who continues to surprise me all the time. I’ve watched my other kids grow around Finn into sensitive, compassionate children who are accepting of people with all kinds of differences, from all walks of life.
As for me, I've made my peace with my son having Down syndrome, with his being different. I adore every inch of him, his body, his heart, and his mind, and I wouldn't change him if I could.
It's changed me, having Finn. Although I am not a believer in some grand, divine plan, I do believe that being Finn’s mother has enlightened me in ways I never really thought about before. There has been a great deal of introspection, reflection, and reevaluation of what it is I value. What constitutes a happy, full life? Are happiness and success naturally borne out of intelligence and ability to achieve? What are the criteria for a life worth living?
I have a sense of appreciation and perspective that I never had before. I am able to see and accept my fellow human beings with a more open heart and a broader mind; it's made my heart more tender towards those who are different, and harder towards those who are cruel or callous or rejecting of those who are different. It's made me more aware that we all have our trials, and that I and my family are incredibly fortunate and have a trillion things to be grateful for, Finn being one of those.
Sometimes the fear is still there, but I experience moments of fear concerning each of my children when I try to guess at what the future might hold. Life doesn’t offer guarantees to anyone. I don't know what Finn will be capable of, but I have very high hopes for him. Those dreams I had for him that were shattered? They weren't really shattered at all. It just took me a while to figure out that his life is not about my dreams, it's about his dreams, and only he can decide what those dreams are. Only he will be able to show me how his life is going to play out.
What I want people to know most is that this is not a consolation prize. This is not our family just making the best of a sad situation. We do not exist under a cloud of sorrow, and we do not dwell on the fact that our son has Down syndrome. Finn just is who he is, and we're pretty much like any other family. This is just life; it’s rich and full, and it's pretty great.
- October 2011
I am 44 years old and now find myself unexpectedly pregnant with my seventh child. I will not be undergoing any prenatal screenings, with the exception of an ultrasound to rule out any obvious anomalies that would preclude a safe home birth. The reason I'm not doing any prenatal screenings is because there is no test or screening that can tell me if my child will always be healthy, or happy, or successful - or anything. Life is a crap shoot.
Thanks for posting this. It's a lovely read.
I had an ultrasound at 12 weeks during which they checked certain things, but *MY* reason for having the ultrasound was just to see my baby for the first time! Call me impatient, but I just couldn't imagine waiting until the later ultrasound for a peek at the little one.
My only question- and a sincere, honest one, is, do you think it would have made any difference in preparing for what was coming, if you had known ahead of time? I know a lot of women who say knowing the results wouldn't change the course of the pregnancy (they wouldn't terminate), but they would appreciate the time to prepare themselves for something other than a "typical" healthy baby at birth- and what that means in the weeks and months to follow.
I just had an acquaintance get a somewhat questionable report during her anatomy ultrasound that there is something that might indicate Downs.... and it might be nothing. I think she said that they just have to wait and see now... maybe she'll have more ultrasounds at a later date. She was excited to find out she's having a boy, but as she put it, "it put a bit of a damper on things" to hear about the possible Down's. I wonder if she will spend the next 5 mos needlessly worrying, or preparing herself for what is to come. I don't know.
It doesn't seem like a black and white issue... but I'd be glad to hear what you think!
Mara & Joel, 2009
I think that that is a lovely perspective (for you). While we opted out of all prenatal screenings (NT, Quad screen etc) other than our 20 week A&P scan, I have two friends who have children with Downs and went on to get full genetic testing done on a subsequent pregnancies ~ though they had no intention of aborting it gave them peace. I think that that was 100% the right choice for them, just like you feel like your choice was 100% right for you. The point is, having choice is great as there is no one right decision for every family.
Agree with poster above.
Last edited by Khaki; 12-01-2011 at 12:30 PM. Reason: not worth a discussion
My younger brother has a severe genetic abnormality. He was the fifth child. We all learned a lot from him and he is a sweet spirit. But it was also very hard. So hard. He's still here 28 years later despite predictions that he would only live three months. It has been a bittersweet journey. His condition was not known until birth.
When my mom found out she was unexpectedly pregnant with baby number six, she had an amino. She wouldn't terminate, but she needed to know if she would be the mother of more than one severely special needs child. She was relieved when his genetic testing came back normal. He still had his own little issues, but every child does.
I opt out of the early screening because they are not conclusive and I'm not comfortable with the risks of amino. If there were a risk-free, highly accurate diagnostic test, I would get it. But there isn't, so I rely on less risky (and less accurate) ultrasound to help screen for potential issues.
I think this is really beautiful, and the lessons you share are so great to keep in mind even for those of us who DON'T have special needs children.
I don't think it's preachy at all. I actually opted out of screening, myself, but I can understand how one might want to get the mental shift of discovering special needs over with BEFORE the baby's birth rather than after. I don't think screening necessarily means that what you do with that information will be negative. It's just finding out sooner--kind of like finding out gender sooner. For some of us that's helpful, and for others it's not. Personal choice. I think your piece is just lovely whether one wants to screen or not, and I would have really liked to have had this perspective to draw upon when making that decision. I think it would have been comforting either way.
I opt out of all testing as well, even opted out of ANY ultrasounds with my last pregnancy. This time I had the 1 scan at 20 weeks (not even sure why I did). I honestly think I personally would do better finding out at birth that my child was special needs. Since testing is so inconclusive and so many false positives are given I would just feel better not worrying through the whole pregnancy that something is wrong when maybe it is way less severe as they predict. Anyway thank you very much for sharing!!!
DS Ethan 1/29/08,
DD Lola 2/2/10
DS2 Weston 2/18/12
Mara, thank you for the thoughtful question. It's funny, because I am a total Type-A person, a planner, someone who likes to try to be prepared for every contingency ahead of time. And yet, I don't at all regret getting Finn's diagnosis after his birth rather than before. Here's how it went: Receiving the News No matter when you find out, it's likely going to be a shock, and there is almost certainly going to be a grieving process. For me, I was glad that that grieving process happened when I had an actual baby in my arms, a flesh and blood person whose eyes I could look into, whose baby smell I could inhale. I think finding out during pregnancy would have left me with nothing concrete except a scary diagnosis with bleak predictions. I'm grateful that I was able to just enjoy being pregnant, blissfully unaware.
That said, I totally get that for some people, it's better for them to find out as soon as possible and have the opportunity to prepare themselves.
Karly, I'm really not sure why you took such offense to what I wrote (I see that you've now removed your post). I'm not making any judgments. I am a liberal, atheist, pro-choice woman. I believe, however, that truly informed choices are not made - cannot be made - without full information. The fact of the matter is that over 90% of prenatally diagnosed cases of Down syndrome end in voluntary termination. 90%!! That's really, really high, don't you think?
I'm only trying to offer the other side of the coin - the side most women do not hear about. Most prenatal screenings are not absolutely definitive (and so tend to give a false sense of security or a false alarm). The ones that ARE definitive only test for a handful of genetic anomalies - mainly Down syndrome. There is no prenatal test for autism or ADHD or a thousand other diagnoses. Down syndrome is the one that is targeted the most, and it's the most common genetic anomaly. If a woman receives a prenatal diagnosis of Down syndrome, it is highly likely that her doctor will suggest, encourage, and even pressure her to terminate, offering grim predictions of the child always being a burden and never being able to do this or that. These predictions are innaccurate and sorely out-of-date. I'm trying to offer a current, honest picture of what it really looks like to raise a child with Down syndrome. I'm certainly not saying that nobody should have prenatal screenings done - absolutely not. I'm saying that if you're going to have prenatal screenings done, you should have some idea beforehand what you might do with the information gleaned from such screenings. Lots of women say they would never abort, but when faced with a doctor telling them that their child will probably never talk or be toilet trained and who will always be a financial drain on the family and the community, they tend to be swayed by misinformation.
Does it hurt me personally to know that the vast majority of parents would reject a child like mine? Absolutely. I can't decide for anyone what they can handle or not handle, but it does say something to me about how the world still views and accepts my child and people with all kinds of differences and disabilities. And yes, that hurts. I'm trying to make a difference, that's all. I owe that to my son and my family.
Oh man this thread totally reminds me of this http://www.kellehampton.com/2010/01/...rth-story.html has anyone read it? This moved me to giant heaping sobs the first time I read it and continues to move me to this day. I can't wait to read her book!
Lisa, I'm pro choice too. And while I would not abort our baby for any reason, I don't understand how I could judge anyone else's reasons for aborting, period. If I believe that someone has the right to abort because they are due in spring and want a fall baby, or because they want Jimmy Choo's more than a baby, I also have to support and honor their decision to abort for whatever diagnosis they may get. Is it what I would do? No. But that should not give me the right to judge what made that family make that decision.
Lisa - no need to presume any offense was taken. Did you happen to read my response before it was deleted? If so, I find it hard to see how you thought there was any upset. That said, I disagree with anyone how purports to have answers for anyone other than themselves. It's fine to share your perspective (though unsolicited) on prenatal testing, but the tone of the post presumes that people only elect to test because they would choose to terminate. Or that if you elect to test you are not prepared for the risks inherent in parenting any child. I don't agree with that presumption. Your election of an u/s is a test some parents would disagree with. And one that certainly does not provide guarantee of no health issues that would be better dealt with in the hospital rather than at home. But it provides you some comfort/assurance and it's a decision that works for you. The end. Surely advocating for those living with Ds and bettering their lives/positions in society is a wonderful pursuit, but making people feel bad for having prenatal testing doesn't do a lot for that cause.
Also, the nuchal scan along with maternal blood test are over 85% accurate in detecting abnormalities, with only a 5% false positive rate. That's hardly some faulty testing. People can then make an informed decision about the risk of more definitive and invasive tests if they wish. As the poster above mentioned, pro-choice is not a selective stance. Information is simply information.