Lillian asked me this question and I decided I would answer it now instead of waiting for my next Q&A. Thanks for the question, Lillian! :)
If you could turn back the hands of time, or if you were pregnant again, would you want to be aware of your child having DS in advance or finding out after delivery?
I have two answers for this: yes and no. And maybe. I guess that's 3 answers! haha
IF I could turn back the hands of time with Kennedy, I would have absolutely wanted to know she had Down syndrome before she was born. Make no mistake, Kennedy would still be here. However, I knew NOTHING about Down syndrome. I was completely and utterly devastated. At first I thought it meant she was going to die. Then I worried about what I had just done to our family, what I had burdened Kassidy and Kameron with. I freaked out about the future and I thought for SURE that if she DID live, she would be a vegetable. I just didn't KNOW.
If I would have known ahead of time I would have been able to research. I would have been able to read books and find websites like Downsyn.com. I would have found organizations like the Down Syndrome Association of Middle Tennessee. I would have seen that Down syndrome isn't a horrible thing. I would have seen that our lives wouldn't be as drastically altered as my mind first told me it would. I would have had a support system in place full of parents who had been there/done that. Instead, I was given information from the late 1970s which said that most "mongoloid children" were put into institutions.
Instead I was told by a nurse that I could still give her up for adoption... if I wanted to. Instead the first few weeks, and especially the first few days of Kennedy's life were filled with devastation and tears and fear and uncertainty and wondering why God did this to my baby. Instead, when I called friends and family to tell them of Kennedy's birth, I heard more "I'm sorry" than I did "congratulations". And now I get to carry that guilt and that bittersweet memory that comes back to me on her birthday every year. SO for the sake of educating myself, of preparing my friends and family, and getting connected with the right people ahead of time, yes, I wish with everything in me that I would have known.
I did have a subsequent pregnancy with Keeghan, and the question of whether or not we were going to check for Down syndrome came up several times. One family member even gasped and asked me, "What will you DO if THIS baby has Down syndrome TOO?!" Hmm. Kennedy was a little over 2 1/2 years old when I got pregnant with Keeghan. Getting pregnant was a thought out, conscious choice. Frank and I discussed at length whether we would be ok with having another child with Down syndrome. And the answer was yes, because really, Down syndrome alone is no big deal, and Kennedy is awesome! We would have been totally fine if our baby was born with Down syndrome. That was when we were sure we were ready to add to our family.
While we didn't care whether or not he had Down syndrome, we DID want to know about heart defects, which are common with Ds. We wanted to know because if he DID have a heart defect we wanted my prenatal care to be transferred to Vanderbilt instead of the Army hospital. Because of that, we decided to have a level 2 ultrasound. We refused any invasive testing (like an amnio) and we refused the AFP test, since it's wrong more often than it's right anyway. If Keeghan would have been born with Down syndrome, it probably wouldn't have phased us in the least.
NOW that all being said, I have heard the other side of the coin from parents who DID find out prenatally and wished they wouldn't have. Maybe it's a case of personality and what we, as parents, think we would be able to handle better; or maybe it's just a case of the grass being greener on the other side.
So all you parents out there with kids with Down syndrome, feel free to comment! Did you find out prenatally or at birth? Were you glad that's how you found out or would you have preferred it the opposite? Did you/will you do testing for subsequent pregnancies? I look forward to hearing your thoughts.