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What If My Baby Has Down Syndrome?

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On the one hand, I don't know if I could be the mother of a baby with Down syndrome. On the other hand, can I be a mother who terminates a pregnancy?

Pregnant woman

Guestblogger Mommy2b: Being pregnant with my first baby in my later thirties has been an experience filled with fear. One, because with my age (37) comes an increase in genetic abnormalities, miscarriage and health issues like Down syndrome. Two, because I have already suffered two miscarriages, both after the first trimester.

Rather than my doctor's visits being filled with excitement and joy to see my baby's heart beating on the ultrasound screen, they have been tainted with anxiety. Last week, I asked the technician to turn the screen away from me. She replied "Really? You are the first person to ever ask me that." "I'm scared," I said. "That something is wrong, that the heartbeat stopped without me knowing it." I always hold my breath until she nods the OK.

And now this: I have to decide whether or not I will have the procedure which tests for genetic abnormalities in the first trimester (the CVS test). Most people who do this test are prepared to terminate a pregnancy if the results come back positive for Down syndrome. I don't know what to do. Because I have had two miscarriages I want to know if something is wrong with the baby ... but what if something IS wrong? Can I be the mother of a baby with Down syndrome? Can I be a mother who terminates?

I have spoken to girlfriends who have gone through similar situations. They are all on different pages: Several have no problem terminating a pregnancy and firmly stated: "that would be no life for you or a child." Others are absolutely opposed to testing AND termination: "This is a gift from God ... you will love the baby so much -- no matter what."

Which mom am I? If I make either decision, will I regret it? If I keep the baby, will I wish I didn't? Will life be too hard? Will my child and my family suffer? If I terminate the pregnancy, will I forever regret it, and wonder if I could have made a good life for my baby? Will I feel selfish and guilty? 

Help.


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107 comments so far | Post a comment now
McKenna February 19, 2009, 3:53 PM

We have a 4 1/2 year old daughter who has Down syndrome and she has been the most special gift to us. We are in the pursuit of adopting another little girl who has Down syndrome. In the US, there are waiting lists of people who want to adopt children with Down syndrome. While I think people underestimate themselves when they think they cannot raise a child with special needs, these children are wanted and valuable! I thank God every day for our daughter and the joy she has brought to our family and those around us.

Cathy February 20, 2009, 3:01 PM

I am a mom of 6 children of which my last, a daughter has Down syndrome. She is a joy and the light of our lives. She is an intelligent, funny, curious 7 month old who smiles bright, loves with abandon and we have no doubt that she will continue to delight us with each passing day.

Eileen February 21, 2009, 1:20 PM

Let me tell you about our daughter who has Down Syndrome. Anna is 15 now and reads at about a 3rd grade level. She is very verbal and she can add and subtract on a calculator. She plays baseball and ping pong. She does latch hook rugs, makes baskets, weaves, paints and she is a great drawer. She loves step-by-step drawing books! She loves music and plays a melody harp beautifully. She copies a page from a book everyday, takes spelling tests(her parents have to help her sometimes, but she figures out an amazing number of words)and she is the delight of her family. She can recite the entire script of “The Wizard Of Oz” from memory and sing all the songs too. Her sister is 2 years younger than she is and is a caring and responsible 13 year old because she has been taking care of Anna most of her life. Anna loves everyone and she is such a good companion. Sometimes, when her Mommy is just so tired and she needs a nap after a long day, Anna will sit and watch her Mom take a nap. She always likes to go with her Mommy to the grocery store, and Anna always pushes the cart. She is a model of patience and innocence in a world that has lost both of these virtues.

Eileen February 21, 2009, 1:35 PM

Oh, and, just in case you are wondering, I never had any tests while I was pregant, and I think the “test” shouldn’t even be offered. It only leads to abortion and heartache and worry.

Larkinsmom February 21, 2009, 4:38 PM

CVS fails. It happened to me - and that is the one thing I stress to every new mother. Testing is not 100%. Our beautiful little girl has Down syndrome and her brother is typical. Both have special needs and both require a great deal of time, energy, attention and love. EVERY CHILD has special needs. There is no such thing as a “perfect” child and if that is what someone is looking for then they should have children. What if your child is gay? Loves someone of another race that you disapprove of? What if your child doesn’t like your religion and makes different choices? Where does the picking and choosing of what we want in a child end? If you want this child then have it. Don’t hedge your bet on Down syndrome - cause I can assure you Down syndrome aint nothing compared to other things in life. We are a society that thinks of perfection and stress should not be allowed. Blaming marital stress on a child with special needs is horrific and bottom line - selfish. Yes it does cause stress but ALL children can cause that in a marriage. It takes someone who truly is not selfish to raise a child. Anyone can HAVE a child - not everyone can raise one.

Reya February 22, 2009, 12:13 AM

If you can’t love any child, you don’t deserve ANY. Period. The only possible reason for abortion would be to save a child from an extremely painful and early death.

Yes, I know what it’s like—to be a sibling and to play the genetic roulette with every pregnancy, both.

To the person who said “What kind of life could a DS person have?”—A loving, joyful, full and fulfilling one.

Most of my friends with disabled kids feel that their lives would have never been complete without their non-“normal” kids. The only ones I’ve met who believe otherwise are phenomenally crappy parents to their “normal” kids, too, and should have never have had ANY children. I’ve yet to meet an exception to this rule. So, if you think you’d abort—don’t have kids. You’ll be a lousy mother, no matter how “perfect” the kid is.

Sandra February 28, 2009, 12:58 PM

Go Reya!

I have a daughter with DS and I am still trying to figure out why anyone would have wanted her dead. My other children take no more of a back seat to her than they would for any other new child in a family. She doesn’t cost more than any other child… and there is nothing hard about raising her. Stages of learning take longer but they are no more difficult. She probably won’t be a rocket scientist but so what. Don’t tell me that her quality of life is any less than that of my typically developing children. It isn’t… she is just as happy if not happier!

I think a lot of people make uninformed excuses as to why they couldn’t raise a child with DS when really maybe they are just scared and ashamed. Those initial (and normal) feelings pass and then you have an amazing new person in your life and you wonder why you ever felt that way.

By the way, I am pro-choice. If you don’t want a baby, abort or give it up for adoption, but if you do want a baby, don’t let a diagnosis of DS stand in your way.

Lillian March 3, 2009, 1:44 PM

Wouldnt that be a little selfish of you to terminate. I mean if your baby has down syndrome, then that means that GOD choose YOU to be the mother for him/her. And GOD knows what he is doing, he wouldnt give you this role and then leave you, he will remain with you through the entire thing. My little sister has Down Syndrome, and is the “apple of our eyes”! She is by far the BEST thing that has happened to my family, i promise you that! I will keep you in my prayers!

gabrielle March 4, 2009, 4:03 PM

My name is Gabrielle, i had my 1st child in 2004 and all was ok through the pregnancy, a little rocky through the birth but i now have a healthy 4 year old.
My 2nd pregnancy in 2007 was a shock but my partner and i were very happy. on the 20 weeks scan we foundout the baby had a very seriou heart condition and we were told that there was a posibility that the child could have downs syndrome but not likely. I had to have regular scans and the baby seemed healthy as could posibly be considering the circunmstances. when our son was born he was taken straight to ICU to be watched until he was tranfered to another hospital.
That was when we were told that he would be tested for downs, my partner was terrified but i was sure that the test would come back negative.
When the reults came bacck that he had downs syndrome we were devastated then i suddenly realised that this child having downs made no difference to me being put under a specific category, it was still the same child that i had grown to love whilst in my stomach and the same child i fell in love with when i 1st saw his gorgeous blue eyes. When we told the family they were all devastated which made me very angry as they were acting as though he had died, they eventually came to terms with this and he was loved by all so so much.
Downs children are discriminated against a lot as though they are slow and hard work, but trust me from my experience i saw it as a challenge and i loved every minute of it. when they do eventually achieve something in their life it takes them a lot longer but they have tried so much harder and it makes it that more worth while. they are such beautiful children and have very special, specific talents.
its not all negative when having a downs child trust me, im 24 years old old and i love my son very much and he amazes me all the time. think positive

JLC March 13, 2009, 12:39 AM

This is a very personal decision to make. When I was told during my pregnancy that there was a possibility that my son would have Down syndrome, I didn’t know how to react to that. I was confused and scared. It had been a long journey to Parenthood. We struggled to get pregnant with our daughter, then three years after that I suffered a miscarriage and then a year after that we got pregnant on our own….with our son. He is 9 months old and he has Down syndrome. After he was born, we went through the “why did this happen to us?” stage and the grieving period. Then one day, we stopped grieving the son that we “should’ve had” and we fell madly and completely in love with our son. He is truly amazing. I wouldn’t want him any other way…
Fortunately today we live in a world that provides therapies, financial assistance, support, etc. for families with children that have special needs. No, it won’t be easy, but is it worth it? Absolutely. Best of luck with your decision.
-JLC

Gail Cooke March 13, 2009, 1:21 AM

Well, to be honest, I don’t think I could do it. While I wouldn’t abort the child, I think I would have to put the child up for adoption.

I’m just being honest.

Kathy March 13, 2009, 9:57 PM

What if you had a child already….that say, was in a terrible car accident which resulted in brain injury. Would you give your child up for adoption then? Think about it.

Stacy March 13, 2009, 10:02 PM

There is no perfect child. But I will tell you that a child with Down syndrome will love you unconditionally and for always. You should be so lucky.

Steve March 14, 2009, 2:50 PM


Six years ago, our daughter Anna was born. Similar to the Sarah Palin story, we were informed during the pregnancy that she had Down syndrome. With the help of our faith, and despite pressure from doctors, we made the correct (though difficult) decision to keep our baby. Not only have we never regretted our choice, but Anna is now truly the joy of our lives.

When Anna was three, I wrote a song as a birthday present to my wife to summarize the full range of emotions that we had experienced. The song is called “God Doesn’t Make Mistakes”.

A music sample is available on my web site www.newfamilymusic.com. A YouTube link can also be viewed: http://www.youtube.com/watch?v=NfuaNhXI1Ao

I encourage you to give it a listen.

Sincerely,
Steve Moser

G March 27, 2009, 2:33 AM

Please remember that life is something you are being blessed with, isn’t your right to destroy it, no matter if that baby in your wound has Downs. My baby is 4 months old, was diagnosed with DS at delivery because the prenatal test couldn’t identified it. Yes, I did prental testing to be prepared, not to terminate and even with that docs couldn’t identified it.
Being a mother isn’t your decision but your responsability from conception, so Yes to the test, and big No No to abortion.
What I can say about DS, that we are enjoying our baby (first born) he is ours, he looks like us and act like us, we love him, and we’ll provide the best quality of life. Yes, we want to give him more sibblings.
My best wishes to you, put those fears aside.

Kelsey April 14, 2009, 1:57 PM

i dont think that you have any idea what it is like to terminate the life of a child. it isnt something that you ever get over, especially if you do and you find out that you just ended the last chance of ever having your own child. i dont think that the feeling of killing your own child is something that you want to live with for the rest of your life so hopefully you have chosen to keep your baby no matter what and love and charish it because once its gone you can NEVER get it back

Jennifer April 22, 2009, 3:47 PM

To this poster: “Downs children are wonderful and advances in medical technology are amazing. You should be ready , however, to be caring for the child for rest of your life.” Please do not attempt to comment on what you have no clue about. Comparing a child who has Down Syndrome (not “Downs children”…they are children FIRST)? That is ridiculous.

Secondly - perhaps you should do your research from sources beyond the 1960’s. Children who have Down Syndrome grow up to be Adults who work, get married and yes - even earn college degrees…who happen to still have Down Syndrome.

It’s all this outdated and misinformed information out there that makes decisions like hard for people like the OP. To the OP - please just make sure you’re not making this mistake. It is a personal decision - but I promise you if you do your research in the right areas, the right decision will be clear as day :) I promise.

Jaimaie April 28, 2009, 5:18 PM

I have just been told today that my baby I am pregnant with now (12 weeks) has a nuchal fold. I am 21 yrs. old and this is my 2nd child. I am going to get a little more testing but I will definitely not be getting a cvs or amnio. I know that no matter what, I will love that baby. You should check out some books about that. I have always read that down babies bring so much joy because when they reach a milestone it is so much more satisfying because EVERYONE has to work for that…I wish u the best of luck though.

Anonymous June 12, 2009, 6:59 PM

I just got my test back today that my child possibly will have DS. My husband and I were crushed. We suddenly jumped online, trying to discover more about this and let me tell you, after reading all these responses I feel so much better. There is still a large chance our child shall be normal but weather he/she is or is not, I refuse to abort a life and I refuse to give him or her up for adoption! This is my child, I will love it no mater what happens and a big thank you to all you who are posting such beautiful stories of your children with and without DS who are doing just fine in life. Luck to the poster of this article, may you read each one of these and make the right decision!

- Xim

Katy June 13, 2009, 11:27 PM

I am pregnant and have lots of reasons to worry too. I am overweight and I have seizure disorders which puts me at double to triple the risk for neural tube defects. For me, abortion was never an option. I was adopted as a baby and think that if you don’t want a child, please give it up for adoption. I was blessed by my adoptive parents, and I know that while it may be difficult to give up a child, you don’t have to face the same type of guilt.

I had the tests for CVS as well as AFP test. I like to prepare for everything as much as possible, and wanted to know if something was wrong so that I could find out as much as I can beforehand. So far everything looks good, but the tests aren’t completely accurate…so I still worry that something will go wrong.

I know, however, that I will love him regardless of his mental capabilities. If you truly feel that having a special needs child would overwhelm you, then I beg you as someone whose life was once in the balance between adoption and abortion…..please put your child up for adoption! Just remember, you will never be given more than you can handle!



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