I haven't posted on here before but have read it.
Felt I should share my story.
I was told at 20 weeks pregnant that if my daughter was born without down syndrome it would be very very rare. We chose not to have any further testing - for a number of reasons.
Dd1 was born with a heart defect and down syndrome. I have posted a lot on here about her - will try and find a thread that has a more detailed account of our story.
dd1 at one
Pics on my profile have dd1 as a babe and at 6. (she recently had her 6th birthday.)
I have actually posted this on another thread but thought it might help here too.
I could write a long post about what it is like to have a child with down syndrome. My dd1 has just turned 6. She is amazing. She was born with a congenital heart defect that was repaired with two open heart surgeries at 8 weeks old. Healthwise - she has never looked back.
She attends a mainstream school as well as one day a week at a special education unit. She is doing so well we are looking at full time mainstream any day now.
Her language skills have improved out of sight and she is just coming on in leaps and bounds.
At school the children fight over who sits next to dd1, who works with dd1.
She is a real social butterfly - very outgoing and loves to chat and socialise. In fact I have to drag her away from school as she wants to stay and chat with all the teachers and parents.
She spent a year in nursery when we lived in the UK prior to emigrating to Aus as I went back to work full time. She has attended a mainstream kindergarten for two years prior to starting school.
I have lots of posts on here about her. She adores and is adored by her two sisters. In fact the baby is very proficient at cheering dd1 on. She can do a YEH RA RA(what she calls dd1) so well.
She has made our life so different and yes there are some tough times - handing your tiny baby over at 8 weeks old for open heart surgery is not a great thing. We have spent a lot of time, energy and some expense accessing therapy for her. Think that has made a big difference.
Dd1 did not walk until she was 3 - then she sprinted. I used to think she would be my special olympian swimmer - now I think she could be my sprinter!! grin
Our antenatal story - at 20 weeks they diagnosed a very serious heart defect which would have meant at least three open heart surgeries before one and if she survived to be a teenager - probably a transplant. We were sent to London to see a fetal cardiologist who diagnosed a different heart defect - complete AVSD - holes in her heart ( serious holes) and a dodgy AV valve. He also said to us that if she was born without down syndrome it would be very very rare. We were then offered an amnio by Professor Nicolaides and we said no. Why - well this was our babe and she would be born. We would deal with it one day at a time. We would sort the heart defect and if she happened to have ds - well so be it. I think dh and I were very fortunate that we knew families with members who happened to have Down syndrome. These people - one was about my age ( in his 30's at the time) and one was a teenager. We had not seen anything to be afraid of. We were more worried about her heart.
I have since learnt in speaking with dd1's cardiologist that our chance was roughly 1 in 5 of dd1 having down syndrome.
I have no regrets about this life and am constantly amazed at how far she has come. To see her determination and her love for life. To see life through her eyes - so many people to chat to and interact with and so little time. Such joy in simple things. Her compassion and empathy for others. As I type this she is running amok with her two younger sisters - doing what siblings do.
The only sadness - that my daughter lives in a world in which some people cannot see past labels and their own prejudices to see the amazing little girl that she is and the amazing young woman she has the potential to be.