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Raising Special Needs Kids Raising Special Needs Kids

Down Syndome

Posted by on Mar. 12, 2014 at 11:32 AM
  • 16 Replies

So, I am 18w1d and had my anomaly screen done yesterday and the bowel portion of the scan came back lighter than usual. The doctor said with the high results from my nuchal transuleceny test and that coming back lighter he suggested the MaterniT21 test which separates out the DNA of the baby from mine to test for T21 which causes Downs. He also mentioned testing for cystic fibrosis. After doing some reading the gene can lay dormate for some time until matched with another carrier. My OB called this morning to let me know that she sent over the lab request to do the blood test. 

I am really just looking for support because if the baby has either one of this or both it will not change mine or the fathers mind on keeping the baby. I firmly believe that God gave me a special needs baby because he knew I could handle it but honestly I am scared and I am trying to be strong but it is really hard. We both have our families support in all of this but sometimes I don't feel like they understand just simply because they aren't going through it. I have gone through the whole thing of what I could've done differently to prevent this but the truth is I did nothing wrong. 

I also am struggling with the thoughts of all the dreams I had with her have gone out the window ...has anyone else gone through this?

by on Mar. 12, 2014 at 11:32 AM
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Replies (1-10):
jjamom
by Michele on Mar. 12, 2014 at 12:57 PM
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My son has Down syndrome. We didn't find out until the night he was born. I had prenatal testing, but they didn't have the MaterniT21 test at that time and I refused the amnio because I didn't want to risk miscarriage. Everything else came back looking good. So, it was a complete surprise to us that night.

What I can honestly say is that I feel my son is the best thing that ever happened to me, he has blessed my life immeasurably. He is our third child and I call him my little "cherry on top" because he is like the cherry on top of a sundae. He is the perfect completion to our family.

With that said, there have been some medical issues and challenges, but nothing that could not be managed or repaired. Our family life truthfully has not changed dramatically. In many ways, my son is a very typical little boy and he is just one of the kids.

My son is 8 years old, in second grade, loves school and other kids, loves to play, is learning to read and write, and is truly one of the happiest children I have ever met. He brightens my day, every single day!

I have no experience with Cystic Fibrosis, but there is another Mom here named Darby who knows A LOT about it since her son has it. She would be a great resource. I hope she sees this post.

If you have any specific questions you'd like to ask, please feel free. Hugs!
dawncs
by Dawn on Mar. 12, 2014 at 1:26 PM
1 mom liked this

I am disabled myself, and I lead a full life. I have met many different people with Down Syndrome, and they are wonderful. Their parents are wonderful too. I both write and work in the local community despite having a chronic medical condition besides which can make it rough at times. I am published as a writer.

arkansasmama08
by Gold Member on Mar. 12, 2014 at 1:40 PM
I would try not to stress too much until you know for sure. I try to hope for the best but prepare for the worst.

I don't have any real advice I guess. Just try to remember that no matter what the outcome, you'll still have a beautiful baby girl. She may be different than expected, but she'll still be here. I will say that the kids I have met with Downs are all the sweetest, most loving kids. With any diagnosis its hard, but start preparing now by thinking on the good, not the negative.

hang in there and keep us posted
Momof4AEMW
by Silver Member on Mar. 12, 2014 at 4:23 PM
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Oh, I can relate!!  My daughter was one of three triplets, so we were not able to have blood testing for abnormalities.  We did however complete the neck ultrasound test (passed, barely), and did end up showing the bright bowel on a later ultrasound that started to raise questions.  We were offered the amnio, but refused as it would not have altered our decision and was not worth the miscarriage risk to us.  When she was born, doctors did not see down syndrome  characteristics in her, but Mama knew.  Once they tested her it was positive ,and we have never looked back.  

She is perfect with heart melting super powers.  Beyond the best surprise of our lives and the heart of our entire family.  She is developmental delayed and has some medical challenges.  We provide her all the opportunities to overcome these, but at the same time prepare to care for her long term if needed.  She is a happy, giggly little girl that just exudes love and joy to everyone she meets.  It is impossible to be sad around her as she will brighten your whole day! 

The dreams you have and think you are loosing will just be replaced by different but equally exciting dreams for her.  She will do many of the things you are worrying she may not, just on her own time line and in her own way.  I wish you and your family all the luck.  Feel free to PM me anytime if you have questions.  And congrats on your new baby.  Regardless of what diagnosis may or may not be to come, she is first and formost your baby, not her diagnosis.

  

Cindy18
by Silver Member on Mar. 12, 2014 at 6:15 PM
1 mom liked this

There are many moms on here that know just what you are going through. 

This group is a perfect fit for you. Welcome!


golfqueen123
by Bronze Member on Mar. 12, 2014 at 10:22 PM
3 moms liked this

I could talk forever about this so I will try to keep it short!  We found out a couple months after our son was born he had down syndrome.  I did not do any of the testing, because I figured what are the odds, nothing would happen to me. Well needless to say my hopes and dreams felt crushed!  Waiting for the test results was pure torture! I had and felt every emotion you can possibly think of! To this day I feel very guilty for some of my feelings! With all that said my son is 7 and is the love of my life!! I wouldn't trade or change him for the world! He is more like typical kids  then i ever thought, considering this was my first child and had no idea what to expect!  It does take a bit longer to reach goals but he does achieve them, we were blessed he has had no serious health issues. Long story  short you will be just fine and so will your beautiful baby! Any questions dont hesitate to ask!!

Momof4AEMW
by Silver Member on Mar. 12, 2014 at 10:48 PM
1 mom liked this

Oh Mama, let that guilt go!!!  He's 7 and wonderful, life's too short to make yourself feel bad for your natural emotions!!  :)

Quoting golfqueen123:

I could talk forever about this so I will try to keep it short!  We found out a couple months after our son was born he had down syndrome.  I did not do any of the testing, because I figured what are the odds, nothing would happen to me. Well needless to say my hopes and dreams felt crushed!  Waiting for the test results was pure torture! I had and felt every emotion you can possibly think of! To this day I feel very guilty for some of my feelings! With all that said my son is 7 and is the love of my life!! I wouldn't trade or change him for the world! He is more like typical kids  then i ever thought, considering this was my first child and had no idea what to expect!  It does take a bit longer to reach goals but he does achieve them, we were blessed he has had no serious health issues. Long story  short you will be just fine and so will your beautiful baby! Any questions dont hesitate to ask!!

 

letstalk747
by Joy on Mar. 13, 2014 at 12:50 AM

group hug  i know its rough

Linagma03
by Gold Member on Mar. 13, 2014 at 1:23 AM
1 mom liked this
Welcome to the group. I don't have any experience with Down syndrome but the children and adults I've met have been probably the best people I've ever met. They have amazing compassion and the ability to love unconditionally. I firmly believe that the chromosome abnormality that creates DS also gives these people that wonderful ability to be such wonderful human beings! That may sound corny but I think those born with DS were put here to make people happy & enrich the lives of everyone they come in contact with. If your child does have DS know that she will bless lots of people!

Good Luck!
darbyakeep45
by Darby on Mar. 13, 2014 at 4:54 AM
1 mom liked this

Welcome and big hugs!  My son has Cystic Fibrosis.  We found out when I was about 7 months pregnant.  He had some indicators (bright bowel, IUGR, etc.) so I had the test to see if I was a carrier, then my husband tested, then we had an amnio to confirm.  He is now 5.5 years old and the happiest little boy you'll ever meet!  Hugs mama!

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