Anyone have a child with Down Syndrome?

[EllaDisney]

We discovered last Thursday via ultrasound that our daughter due in September has Down Syndrome. She also has a heart defect called Endocardial Cushion Defect. Anyone have experience parenting a child with DS?

Thanks
Bianca

 

[ecki]

Yep!

If you're interested in a Down syndrome forum that's great for new parents I highly recommend DownSyn: http://www.downsyn.com/phpbb2/index.php

 

[Scutapipig]

Congratulations on your baby girl!

My son is 12 years old and we found out in utero that he would probably be born with Down syndrome. It has been an absolutely wonderful, enlightening, and positively endearing 12 years with him! Parenting him has been full of joy and giggles and he has taught us more about the beauty of life and love far more than we could ever teach him.

There are times when it will be difficult, when reality sets in and you realize that from time to time your daughter will be discriminated against, or her struggles will seem insurmountable, but if you approach it with a positive attitude, then others will follow your lead and the road is a lot less rocky. And, as with any child, as parents, you set the stage for the direction in life your child will follow, so never put expectations or limitations on her and accept her for who she is. You'll find out she will boggle your mind with her accomplishments and that for every time you hear the words, "She can't", you'll turn with a smile on your face and say, "Just watch her go!" And she will.

I'm unfamiliar with Endocardial Cushion Defect directly, but I think its also known as Atrioventricular Septal Defect (AVSD) and any Down syndrome message board will lead you to parents who have dealt with this issue and can help you out with questions.

This site is run by a doctor who has a son with Down syndrome. I usually start here when I need to research something and then follow the numerous links to medical issues and message boards from that site. http://www.ds-health.com/

Karen

 

[SandrainNC]

Congratulations on your pregnancy and your daughter!

My oldest son, who is 7, has Down syndrome. We did not know ahead of time that he has DS (we skipped the triple screen test - it might not have shown up on that test anyway - I think they have a quad test now), so it was a bit of a shock when we found out. He was also 2 months early (non-DS related) so that was going on and then they came to tell us they were testing him.

Let me say that he is one of the best things that has ever happened to me. The only problems we have had have been from other people, not him. Other people are the reasons for the difficulties. Their attitudes and their ignorance. I used to be very shy about speaking up, but now I do not hesitate to stand up for my sweety! His little brother either if I need to (non-special needs).

There are a good many boards (like this one) for parents of children with Down syndrome. I belong to www.nads.org. But there are others as well if you have questions or just want to "talk".

I am not familiar with that heart defect. Ryan had a small ASD that ended up closing on its own.

Feel free to PM me if you want to talk or anything.

Sandra

 

[JessSpiz]

Hi Bianca,

Congratulations on Linden Caroline! You can not believe the joy that is about to come into your life! My daughter Sophia who has DS will be 8 at the end of the month. Try not to google to much info.-much of it is inaccurate and it will send you into unneeded panic and worry. Stick to the sites that will inspire and guide you NADS, NDSS, Gigi's Playhouse

I have not heard of that heart defect but my daughter had an ASD (atrial septal defect) that was surgically corrected when she turned 1. Most kids I know with DS have had heart surgery or a heart condition that corrects itself. Feel free to email me! I have a list of about 100 blogs of families who have a child with DS. It is great to read their stories.

Jessica