Monday, May 28, 2012

Should I Keep My Baby with Down Syndrome, Or Should I Abort?

"Should I Keep My Baby with Down Syndrome, Or Should I Abort?"
With new and better genetic tests available, this question may present itself to a higher number of expectant mothers / parents each year. And this may be one of the biggest questions these parents will ever be challenged to answer. Either choice a person makes in this matter has its own deep set of consequences tied to it.


I'm addressing this question today because while reading through my "Feedjit" feed (it shows me where visitors to my blog have come from and by what search terms) I found the following:

L., Louisiana arrived from google.com on "Adasperdown Town: (Post Title)" by searching for "i am resentful because no one encouraged me to keep my daughter with down syndrome."

Upon reading that, my heart broke into a million pieces. 

When we received preliminary blood test results that our 3rd child might have Down syndrome, the doctor pushed us to have an amniocentesis. He insisted that we "find out" so that we could "do something about it."
The doctor's insistence made it very clear that he expected us to abort the pregnancy if we learned our baby had Down syndrome. This was the very same doctor who, only days before, was able to tell us that our unborn child was a girl at only 13 weeks gestation.


When the people around you expect you to react in a very specific way to something, it can be hard not to believe that they may be right. We grow up bowing to peer pressure - wearing the "right" clothes, talking the way our friends do, taking part in activities with our peers... we work our whole lives trying to fit in (well... at least most of us do). Most of us don't walk around wearing bananas on our head and floral-print body-paint paired with a skirt made from deflated balloons because it wouldn't be socially acceptable... unless, that is, you happen to be Lady Gaga. Provided you are not Lady Gaga (or simply insane) you wear clothes. Most people will go so far as to wear a certain style of clothing that reflects current fashion trends (as opposed to wearing a circa 1973 light blue polyester jumpsuit).

(Sexy, no?)

 We do a lot to fit in, don't we?

Yet a decision regarding whether or not to continue a pregnancy should not revolve around what other people expect, or even what your doctor expects, but around what is right for YOU.

But how can you possibly know if having a child with Down syndrome, or aborting that child, is the right thing for you if you have no prior knowledge of parenting a child with DS? 

The information your doctor might give you on Down syndrome might sound very frightening! Your baby could have heart defects, bowel problems, be near-sighted... and then there's the whole "mental retardation" issue. This probably wasn't what you were expecting when you decided to have a baby. How could you possibly parent such a child? Could you even love this child?

It's a lot to wrap your head around, isn't it?

I'm not going to tell you what to do. I'm not going to tell you what the "right" choice is. That's a decision only YOU can make. But what I can do is offer up some things to think about that may help you make a choice that you can live with.

That long list of "problems" your doctor may have discussed with you? Any child without Down syndrome can have some or all of those health problems too.

According to HealthyChildren.org, "About 2 percent to 3 percent of children are considered intellectually disabled (formerly called mentally retarded). Their general intelligence is significantly below average, and they have difficulty adapting to their environment"

What that means is that 2 or 3 out of every 100 children born have some form of intellectual disability. (Most of them do not have Down syndrome.) Any child can have an intellectual disability for any number of reasons. 


 As for heart defects,  The March of Dimes website reports that: "About 35,000 infants (1 out of every 125) are born with heart defects each year in the United States." Here again, any child can be born with a heart issue - but when you are pregnant with a baby who does not have Down syndrome, doctors don't sit you down and list all the things that "could" be "wrong" with them.

Another thing to keep in mind is that many, many children with Down syndrome DON'T have a long list of medical problems. Many are perfectly healthy kids.

I've heard people say that they don't feel equipped to parent a child with a disability. (I suppose those people believe that there are some of us who grow up dreaming about having a disabled child?) 

 (Parent equipment)

The truth of the matter is that if you are ready to have a child, and the child in your belly was planned and not accidental, you are equipped. There are no guarantees in life. Even though you can find out if your child has Down syndrome before he or she is born, there are hundreds of thousands of other things that medical tests can't tell you. One of the first things you will learn about parenting (any child) is that you have to learn to parent on the fly. You have to learn as you go. 

As the mother of 3 children, I can say that it has not been harder to parent my child with Down syndrome. It has just been different. I will also add that I must also parent my other 2 kids without DS differently than each other. Because you know what? Each and every child is different and requires different things! It's true! Ask any parent who has more than one kid :-) Not harder. Just different.


Perhaps the most frightening part about learning your unborn baby has Down syndrome is simply not knowing what to expect. You may have certain ideas about people with Down syndrome, and not all of those ideas are pretty. I would suggest you not make a big decision based upon what you *think* you know about Down syndrome. Did you know that many, many people with Down syndrome now graduate from high school with academic diplomas? Many go on to have jobs and live independently? 

Are you worried about how others will treat your child? Remember, as with the rare cases of child abductions, we only hear the negative reports of the mistreatment of those with disabilities. For every one bad story, there are millions of good stories that we don't hear.

And if you already have other children, will they resent a sibling with DS? Will they love him or her? Will they be tied down by their sibling if something should happen to you? While I can not answer these questions for everybody, I can point to a study that found that "88 percent (of siblings) said they felt they were better people because of their sibling with Down syndrome." (Click Here to see the entire study.) How many kids out there would tell you that their "typical" sibling made them a better person? (Are you laughing yet?)

 In fact, here's a blog written by a wonderful woman who grew up with an older sister who has Down syndrome. It couldn't have been too bad, because you know what she did? She and her husband adopted a little girl with Down syndrome.

Another misconception is that people with Down syndrome "suffer." You might hear someone say "I don't want to bring a child into this world only to suffer." I'm happy to say nothing could be further from the truth! People with Down syndrome don't "suffer" any more than any other regular human being. In fact, my own daughter does things just to get me to laugh. She loves to laugh and she loves to make other people happy.

If you spend a few hours reading other first-hand accounts of what it is like to have a child with DS, and you still think that you would be unable to parent such a child, don't discount the possibility of adoption. There are actually waiting lists of people who want to adopt children with Down syndrome? (Click here to read an article about waiting lists for babies with DS.) While this article was written in 2006, it is still true. In fact many families are adopting children with Down syndrome internationally!

On a personal note, I'm going to interject a little story... Right now we are arguing with our school system to be allowed to have out daughter repeat kindergarten. You see, The Skink was born 10 weeks prematurely and shouldn't have had her birthday until about a month after the age cutoff for starting school. Since the school system bases starting school on a child's actual birthday, they put her in kindergarten this year. We just want her to have one more year and not grow up being the youngest in her class... BUT... since she reads well above grade level and did so well in kindergarten, the school system doesn't want to let us hold her back! See... so I can't say raising this child doesn't have its issues. LOL - just not always the issues you might expect.

I also understand there may be another side to the coin. If you are pregnant with a baby you did not plan and do not want - all medical issues aside - then it comes down to a question of your personal beliefs about abortion. It is a deeply personal decision and one you must make based only upon what is right for you.

For anyone who would like more information about what it's really like to raise a child with Down syndrome, please take a peek at the following links:

One Dad's Journey to Acceptance

My own listing of Public Resources and personal stories related to Down syndrome

Blogs by and about teens and adults with Down Syndrome

Parent Blogs About Raising Children with Down Syndrome

One mom's wonderfully written birth story

If you have found my blog because you are faced with your own dilemma, my heart goes out to you. I hope my words have been helpful in some small way. 

If you are here because you are one of my regular readers and/or already the parent of a child with DS, then you are lucky - lucky because you already know how wonderful it can be.You already know just how overwhelming your love can be for a child you probably didn't plan on and possibly didn't feel equipped for at one time in your life.

(Does this child look like she's "suffering" from Down syndrome. Um... no! She's pure awesomeness in pink!)
Am I wrong? Please comment! Please add your own thoughts if you think they might be helpful for someone faced with such a big decision. I do ask people to remember that people of all faiths and religions are welcome here.

*

13 comments:

  1. No, Leigh, you are NOT wrong. Parenting more than one child is different from the first to the last. Prior to becoming pregnant with PJ, my son with Down syndrome, I remember telling a friend that God chooses really special, well equipped people to have these children. Soon after, I discovered I was pregnant, that my child has Down syndrome, and when I remembered my comment, I realized how totally wrong I was. I am NOT well equipped, or special in the way that I meant. I just know I am special to PJ, and I am thankful everyday that he is in my life. For sure, of my 3, he is my biggest life lessons teacher.

    ReplyDelete
  2. I have three kids with Down syndrome. One biological who is turning 16 next week, and two others who are adopted. I also have 5 boys who are adults living on their own. All my kids...every one of them...are different from one another weather they have DS or not! My oldest with DS is stubborn, willful, and absolutely hilarious. She has more confidence than all her older brothers put together. She thinks nothing about getting up on a stage in front of hundreds to tell her story. My 11 year old is the most soft-hearted, gentle soul. He is also the first to laugh at my jokes. Our youngest with DS is 7. He's just plain adorable. That's all! Well he has lots of other qualities but we're still trying to get past his adorableness. We CHOSE to add two more kids with DS to our house because we knew it wasn't that big of a deal. Our oldest had some very serious medical complications and we felt prepared to deal with just about anything else. Our boys have no long-term health problems and don't even catch colds. Angela has her own blog (ugh, I need to get on her about updating it!) and she is just plain a riot. http://www.itsmylifemom.blogspot.com/

    ReplyDelete
  3. This blog has been so helpful! I'm about to be 25 years old and I'm 22 weeks preg. Found out this week my baby is having issues moving its wrists, knees, and ankles. Did the amnio and found it has DS Which has probably lead to low muscle tone in those areas. My genetic counselor n doctors all talk to me sadly as if they already know i will abort my baby. But i feel it moving i saw its little ribs and it jumps around after waffle time and i know it will be difficult but it will also smile n laugh with me. Im young i believe i hve the stregnth and time and heart to love this kid and take care of them. I had a miscarriage 7 years ago that devastated me. I ws tol i would never be able to have children, so i see this one as my little miracle. Docs tell me im young i can try again and have a perfectly normal baby and life lol. Im not scared of my future with my baby, im looking forward to it, i kow its not the choice for every one, but for me there is no other option, i already know and feel this baby is mine and it will have a good life with me

    ReplyDelete
    Replies
    1. Spaystoutchic - Congratulations on your pregnancy! Some day you will sit, watching your child in awe, and wonder why those doctors talked to you like your child was something to be sad about. You'll know that your beautiful child makes you smile every single day, and you'll be so thankful for him or her. Hugs! I can tell already that you and your beautiful kiddo will do just fine!!

      Delete
  4. Im nervous only because I think my boyfriend son has some mental issues not really normal to what I have seen and Im just scared that if we have a child he/she will have some issues just concerned and kind of panicking becausr I have never had to deal with such a thing.

    ReplyDelete
    Replies
    1. Dear Anonymous (Oct. 2, 2012) -
      It sounds like your boyfriend's son's mental issues are far different from Down syndrome. The two conditions wouldn't be related. Regardless of whether you're asking because your unborn child has Down syndrome or you are worried about another condition, all I can say is that many mothers-to-be have never had to deal with such a thing. Possibly most of us never had to deal with such a thing prior to having a child with Down syndrome or any other "difference," mental or physical. And yet you ask any one of us now, and we would tell you we wouldn't trade our kid for anything!

      Life is filled with challenges. I can't tell you what to do or what not to do. You have to make that choice yourself. What I can tell you is that because of the challenges our family has faced (not just DS), I believe we see the beauty in the world - - I mean really, truly SEE... and feel and enjoy - - more so than other people who have not had such challenges. How would you know how wonderful warmth felt if you had never experienced the freezing cold? How would you know how beautiful a song could be if you have never experienced silence?

      If you forever shy away from the challenges life presents you, you may miss out on some of the most wonderful and amazing things life has to offer because you never learned the ability to see them.

      It's OK to be afraid and it's a GOOD thing to learn that life will not always be easy or perfect. Believing that it will only sets a person up for feelings of failure. Embrace life's imperfections and learn from them :)

      Delete
  5. Thank you :) my child has a 1:8 chance of having DS reading this just made me feel better ....

    ReplyDelete
    Replies
    1. Dear Anonymous, Congratulations on your pregnancy!! Big hugs to you, and I'm happy if my words have helped soothe any of your fears. We all start of with those fears. Those fears soon melt away to the pure, wonderful love of our children.

      Delete
  6. I am 24 weeks pregnant with my second child (third pregnancy as my first was a loss) and after finding some abnormalities in my 20 week ultrasound we met with a genetic counselor and found out that we now have a 1% (instead of your usual 1/900) chance of our baby having DS. I am not going to lie, I am very afarid, and I think a lot of that fear is really just fear of the unknown...I really don't know that to expect, and now I am stuggling with trying to make a choice as to if I should have an amnio or not to confirm...in the end it doesn't change anything, but I'm wondering if it would help just knowing one way or another??

    ReplyDelete
    Replies
    1. Hi there. I feel you.. 21weeks and found out that our baby girl has VSD in the heart.. was told to test for DS... but the oscar scan reflected low risk in DS.. what will it change even after doing the test? I really dont know.... feeling so lost at this point of time....

      Delete
  7. I almost cried reading this. This is probably the toughest decision that I'll ever have to make, no matter what it is it's going to live with me for the rest of my life. i found out today that the advanced blood test that has a 99% accuracy rate came back consistent with DS. My boyfriend and I had a long talk about it all day, and even talked to his mom (who would be pretty much the main provider for our child since the pregnancy was completely unplanned.) I can admit that I am completely afraid of what's going to happen, but just given our situation and the fact that we're completely not ready to even have a child just boils down to the decision that we're most likely going to abort. I feel like a terrible Christian in this decision cos I've always thought has a child as a gift of God, whether unplanned at 16 or planned at 30, but I don't want to be judged that I'm a murderer or other things that I've read cos I've looked at this in every way, from every side possible. I do know that if we do get pregnant whether its planned or unplanned, and the child has DS, we will keep it, because that's definitely a sign from God and there is a reason for it, but at this moment in time, It's just such a hard decision.
    Just keep me in prayers, I'm scared and neither of us are proud or happy of this decision ):

    ReplyDelete
    Replies
    1. HUGS! You are in my thoughts and prayers during this difficult time!

      Delete
  8. I am 30 years old and have a baby girl with down syndrome. I am dumbfounded at how NORMAL she is. words can not express how deeply my love is for her. I often think I am the one who is more attached to her than she is to me! My older son loves her to pieces. sings to her when she is mad, tackles her to play and feels out of place when she is not in the room with him. Again, she's proved to us that we depend on her for so much than we have ever expected.
    thank you for your blog on your amazing little girl(who is probably even bigger now!)
    if more people heard the positive on down syndrome fear would leave "unknown" alone.

    ReplyDelete

This is the part where you get to say something! I'd love to hear from you.