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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
Valerie February 17, 2009, 1:59 PM

Our daughter with Down syndrome is not only the glue that brought our blended family together, but a major catalyst to people with low expecations. She’s met every milestone within the “normal” timeframe. Think about this for a minute: if there had been genetic testing available in 1808, Abe Lincoln’s parents may have aborted him because of the Marfan’s syndrome. How different would this world be?

Tricia February 17, 2009, 2:35 PM

Beenthere is right—this doesn’t have to be a question that gets answered now. The waiting list here in Florida for children with DS is over a year. There will be plenty of people who desperately want that child if it turns out you can’t handle it. I have a child with DS and we fight the disorder with everything we have because it often keeps us from seeing all of the little girl we dearly love—but it’s a fight we win more of every year. As for families, it’s a mixed bag. Many marriages fail, but nearly every marriage faces stress at some point and the failure may or may not have been because of the child—probably isn’t. As for the siblings—WOW!!! I wish I could put a child with DS in every family—not for their sake but for their brothers and sisters. They are almost always become much more mature, settled, happy, compassionate people—and that is a solidly established statistical observance. There are times they can’t do everything everyone else does, but there are plenty of times they do things no one else gets the chance to. (Doing Disney with a special needs child is a really spectacular experience for everyone.) The biggest risk is that you will fall in love with someone really special—stubborn, feisty, affectionate and hopeful. You also get the chance to become a part of a really wild group of families—amazing people—and I’m pretty sure they didn’t start out that way. It’s not that you don’t grieve for what might have been, but I’m genuinely surprised every day by what I had given up on coming through anyway.


Sandy February 17, 2009, 3:29 PM

Some really great points made, here.
1. No such thing as a perfect child.
2. Had miscarriages and still willing to abort…think hard about what motherhood really is.
3. A sibling with DS is actually more of a benefit than a burden to the other siblings.
4. Family cohesion.
5. A disability is not a life sentence.
6. No such thing as a stranger.
7. We have a right to a perfect child? No way…we don’t have a right to any child, when you really think about it.

Someone religious once told me that she was glad that her son with Down Syndrome would never ever be able to sin. He didn’t have the ability to understand and therefore couldn’t sin. Very cool.

been there February 17, 2009, 4:16 PM

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. If the child is high functioning that will not be a significant burden, but you need to look into yourself to decide if you are ready for that responsibility. Without siblings to take over as guardian(s), you will owe it to your Downs syndromw child to set up a Trust to take care of the financial burdens of caring for the child and set up a guardianship relationship. As it is currntly, with good health care these children can live to be 50 or 60 or beyond. My sister who is now suffering with Alzheimers, is now 59. My brother and I share the responsbility of seeing to her care, but my parents care of setting up such a Trust takes care of the financial burden. Just wanted you to be aware of all the issues. Good luck and God bless you. This is no easy decision.

Kayla February 17, 2009, 4:36 PM

For me this would the easiest choice ever. I actually was told that my first child has DS and was pressured to terminate by the Dr. I refused because there was no way I could kill my baby. Sure I was scared, the unknown is always scary. However; we continued on with the pregnancy and this baby that the Dr. would have had me kill was perfectly healthy. For my 3rd child I never even considered that there could be an issue and found out at birth that my little boy had DS. Of course I was scared and upset, but quickly realized that he is simply a little boy. He runs, laughs, plays ball, plays with trucks, and in general does what all of the rest of the little boys that he plays with do. I can not even tell you how much of a blessing that he is to me and to our family. My little boy is 3 and I would not trade him for ANY “typical” child. He is simply the light of my life!

Stephanie February 17, 2009, 4:41 PM

Being pregnant after 2 miscarriages is a great GIFT and not one I would question. I do have a daughter with Down Syndrome and she makes every aspect of my life more rewarding. Last night we went to the mall and she asked me for french fries from MCDonalds. I of course said no, but she struted herself up to that counter and with no money and only cuteness, she got what she wanted. I always imagine the loss people must feel not having someone like my Megan in their lives. I feel bad for families who do not experience what I do on a daily basis….don’t give the question in your mind another thought. ALL LIFE is precious, but some LIVES are more rewarding…it is good to be on my team!

Teacher February 17, 2009, 4:42 PM

I have a 3 year old son with DS. We did an ultrasound to look for DS, and was told that 99.9% sure that he didn’t have DS, so of course I was shocked when we leared about it at his birth. Sure we cried and mourned - but he is the light of my life. He makes me smile everyday! Everyone who knows him loves him. Today, the only sadness I have is for the ignorant people in the world that judge people and assume that life is not worth living if it is different. While I respect their decision, I am sad for them since they live in a world with unrealistic standards.

I too am a little distraught at the comments of “perfect” child. Let me tell you, I’m a high school teacher and there’s no such thing as a perfect child! Every child has their issues - some of them are bigger than others. Also, the students that I have that have siblings with disabilites are some of the most thoughtful and well adjusted of the bunch.

One last comment: my cousin had an amnio done on her last pregnancy because the triple screen test came back positive for DS. The amnio came back clear, however, her son has major issues. He’s over 3 years old now, he doesn’t walk, barely crawls, doesn’t talk, can only eat soft foods, and has seizure issues. There is no diagnosis for what he has (most likely due to seizures). So, it’s all a gamble. The test may not show anything, but you may still have a child with CP, Autism, or seizures. And let me tell you, what my cousin is going through is MUCH HARDER that anything I have had to go through with my son.

Anonymous February 17, 2009, 5:21 PM

I really question those “anonymous” answers from people who say that they would have terminated if they had known that their child would have Down SYndrome. I wonder if those people are truly parents at all or have an agenda to create an elite society. I have never yet met anyone who has a child with Down Syndrome that regrets their decision to keep their child. Not even once. These children bring a ray of sunshine into the lives of those they touch. I think it is the fear of the unknown…in which case I recommend talking to other moms who have children with Down SYndrome (local Down Syndrome association or forums on the web)
Like any child, they bring challenges into the family, but they also come without some challenges, such as drug issues later on, teen sex,etc…they will never become doctors or lawyers, but they do have their own unique gift to bring into the world which makes the rest of us more human! I think we should all operate less on fear and more on trust.


Ibby February 17, 2009, 5:46 PM

Oh my dear one,

I can truly remember how dark it felt at that time in my life. But what I can tell you with all honesty….all of the mourning and fussing that I did about receiving a prenatal diagnosis of Down Syndrome was a total waste of energy. I have 11 children, and our youngest does have Down Syndrome. Before he was born, I truly thought I knew all there was to know about loving a child and being a good mother. But this special child has taught me more than I could ever have imagined! I finally learned what real, unconditional love is….and that is why my son teaches us all every day! I admit, I did feel sorry for myself in the beginning, but now I feel sorry for all those who will never feel how wonderful it is to give and receive this type of love!!

And for the responders who have posted about having a child like this not being fair to the rest of the family, our entire family is over the moon for this child. He delights us every day!! He has given great strength to our family and our marriage. These are some pretty major life accomplishments for a 2 year old!! Can the rest of us say our time on this earth has been such a positive impact for those around us? IDK…

I have to tell you, you already sound like a mother who loves her child. Keep that love foremost in your mind and heart, and you will be all right!!

Ibby

Nicola February 17, 2009, 5:59 PM

Its easy to tell ourselves that life with DS will be too hard and that we can’t do it. What I have learned is that I can do way more than I gave myself credit for and that far from being too hard, life is in fact WONDERFUL. My little Gianna is a beautiful child, our whole family is happy and in love with her, it has no bad effect on my other 6 childrens lifestyle. Nothing but good can come of giving birth to a child with down syndrome!

Ellen February 17, 2009, 6:07 PM

I can answer some of your questions.

If I keep the baby, will I wish I didn’t?
No, you will not. You will however look back and wonder how you ever lived life without knowing such love.
Will life be too hard? Being a parent is hard. That simple. You do what you have to do for any child that you have.
Will my child and my family suffer?
Not at all! Our family is not suffering!
If I terminate the pregnancy, will I forever regret it, and wonder if I could have made a good life for my baby?
I know some women to sadly say to you that this will most likely happen. And every time you see a child with Down syndrome playing, out with their family, smiling, your heart will break all over again.
Will I feel selfish and guilty? I cannot help you with that one. But the fact that you are questioning that now, might be a good indication.

Most of us that have had children with Down syndrome will tell you at some point we said something like “I could never do it.” But here we are, doing it, and many many many of us loving it! We have discovered truths that no doctor or fact sheet knows about.

If you have a child with Down syndrome…you will discover shades of color that you never knew were possible.

Read blogs of families that have children with Down syndrome, join a forum for parents. You will discover quickly how close our community is. How amazing it is. A family, one that you will love and be proud to be a part of.

Also, there is a book out there called “Gifts: Mother’s Reflect on How Children with Down Syndrome Enrich Their Lives.” This is the one book you need to read.

People that do not know first hand what it is to have a child with Down syndrome often have misconceptions, I was one of them! I was right until I had my daughter. But now I know. Her life has great value and meaning. She has already changed hearts and lives. Her life is worth living! We have celebrated every single accomplishment.

And just so that you know, every person that meets her ends up wrapped around her finger.

Take care
Ellen

Ellen Hsu February 17, 2009, 6:09 PM

I have a 3 year old son with Down sydrome. When we learned about his diagnosis I kept thinking, “This is not what I planned for my life!” It’s not what I planned, but it is still wonderful. Elijah is a delight and a joy. And raising him is not really all that different from raising our older son. We never know what we can handle until we go through it. I’m going to post an essay I wrote about our decision to keep Elijah at my blog. Feel free to stop by if you think it might help you.

Meredith February 17, 2009, 6:32 PM

I have a 5 year old ‘typical’ son that has been an absolute treasure and joy. I also have a 3 year old daughter that is the one that draws everyone’s affection and smiles. She has Down syndrome. Yes, there were medical difficulties that we had to go through and overcome, but at just 18 months old- in the midst of all that- we knew we wanted more children with Down syndrome.

One year ago (tomorrow!) we adopted 2 more children with Ds from Eastern Europe. What a blessing and joy it is to be the mother of three children with Ds AND one little boy without it.

The journey’s a bit different than others’, but I love every day of it. In fact we may adopt another child with Ds in the future- did you know there’s a waiting list of over 200 families wanting to provide a home for a child with Ds? Do a little googling, Ds isn’t so bad— and adoption is a wonderful option if you don’t feel that you’re able to care for baby…

Want to see what life with kiddos w/ Ds is like? www.cornishadoptionjourney.blogspot.com

Michelle February 17, 2009, 8:16 PM

no one ever knows the things they can handle until they handle them, you know? If you had told me 10 years ago that not only would I handle a child with DS, I would embrace the experience, I would have told you you were nuts. :)
There is something about these children that just brings out the best in us as parents. One thing I alway try to remind people is, the baby you have loved all these weeks hasnt changed, you just know more today than you did before. Sure, it is scary, parenthood in general is scary. You may be surprised to know there are huge waiting lists for these babies to be adopted. If you find you cannot parent her, perhaps the gift of aoption for another family would be best? But I have a feeling you can do this.
I added a link to a little video of my daughter above, check it out. DS is not the big bd scary it was once upon a time, and love is an amazing elixir. Best of luck to you.

Beth February 17, 2009, 8:30 PM

Wow, that is A LOT of worrying over a TEST!! A silly test that doctors may tell you they recommend!! RELAX and ENJOY your pregnancy!! Even if you did have this test, it would not tell you an absolute answer. It would give you a guess. A number. That’s all it would be—a number. In the end, your baby is your baby, regardless of what number some doctor tells you.

If you’re questioning whether or not to have this test, to me, that tells me everything I need to know. You do not want this test. You want to relalx, enjoy your pregnancy, and love your child…no matter what.

I seriously doubt you’ll find one single parent of a child with Down syndrome who would tell you that they wih they had aborted. I happen to be the mother of a 4-year-old with Down syndrome. He’s my oldest. My first pregancy ended in miscarriage, then I had my child with DS, and then I had a “typical” baby and I would LOVE more kids…DS or not. I actually would like to have one more naturally and adopt one with DS.

I know literally hundreds of families that have a child with Down syndrome. Each and every one of those families are blessed by their child and they love their child. They all lead happy, normal lives! Truly, they do! I promise you that. Families like mine, we go out to eat, we go to movies, we take family vacations, we have girls night outs, we laugh, we love, we have family gatherings and dinner parties. We have NORMAL and HAPPY lives.

If you don’t believe me, check out the various Down syndrome forums on the internet. You’ll see how normal we really are.

But PLEASE stop worrying about some goofy test that a doctor recommends to you!!!! Tell them NO, if you want. Enjoy this pregnancy and enjoy this child. And congratulations on your pregnancy!!!! :)

Michelle February 17, 2009, 8:33 PM
Deb February 17, 2009, 8:41 PM

Do the CVS test and go from there. Chances are it will be fine or normal. If it isn’t then make the decision.

Joan February 17, 2009, 8:50 PM

Preform the test. I had a CVS test at age 38 because if the technology is there way not take advantage of it. There are many conditions that the CVS will not give you the answer, like CP and others. I do know many Down syndrome kids that seem to always be happy, but, its an individual decision and I may have terminated my pregnancy if it re:Downs. I am glad I didn’t have to make the decision thou.

Melanie February 17, 2009, 9:42 PM

I say do the research on both ends - find out what you can about Down syndrome and what you can about terminating. I was in your shoes a year ago. We had a late pre-natal diagnosis of Down syndrome with a heart defect after having two miscarriages. This was a wanted baby but I was so afraid of what having a child with Down syndrome would mean for our other children, for my husband, for the future of our families. I read everything I could get my hands on and I talked to other people who had been where I was. I also met with other families who had children with Down syndrome and, now, I am so glad I did. We have a beautiful, smart, loving little girl whose heart was repaired when she was 2 months old. I remember feeling like I wasn’t sure I could love her and then when I had to hand her over to the surgeons for her heart operation I was begging the universe for a second chance. She has brought so much love and acceptance into our family. I shudder to think at what I would have missed out on had I closed that door. However, I’ve never felt more strongly that this is a very personal decision and really only one that you can make - no one else (not even your husband) will live with your decision the way that you do (either decision). I suggest reading the book “Gifts: Mothers share stories of raising children with Down syndrome” - it got me through the dark times. Best wishes.
Melanie
Gracie’s Mom

Sherry Sanders February 17, 2009, 9:43 PM

I’am the very proud Grandmother of five Granddaughters.The special part is that we have twin Granddaughters with Downs Syndrome and they are the best thing that could have ever happened to our family.At two they were diagnosed with Leukemia and and every since I give thanks for there lives.Maybe because you don’t have children you could even think to terminate,but I know after being blessed with a double miracle that these girls are here for a reason and life should not be taken with such disregard.


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