In utero diagnosis is an imperfect science (to quote a peri-natologist I saw during my pregnancy) and leaves so much — not necessarily good — to the imagination at a time when hormones are already raging. Folks say it’s “good to know… To plan!” But, maybe you just can’t “plan” for some things. So you’ve been told that your unborn child has Down syndrome?
Q — Will you sleep soundly for the next 5 months wondering about the future?
A — I highly doubt it. I barely slept well just because I was pregnant… never mind any “bad” news I received from the medical community. And, this is a time when I — and the babies — desperately needed rest!
Q — Can you pre-book the heart surgeon?
A — In utero problems have a way of resolving themselves prior to birth. And, if they don’t, all necessary medical personnel are on hand… You’re in a hospital! My boys were born without any heart defects.
Q — Is it necessary to contact the state’s special services folks in advance to get the ball rolling?
A — No need, they contacted me within a week of my children’s births based on the hospital’s notification. And, Early Intervention began almost immediately upon their arrival home at -4 days old.
Q — Do you put them on the waiting list for the best local special needs school/camp etc.?
– We learned we had to wait and see what level (if any) impairment there might be and then decide. My sons are cognitively intact. As such, we’ve chosen to go the inclusion/mainstream route to facilitate their development.
Q — Should you terminate the pregnancy because the MDs tell you the child’s quality of life will suffer due to the DS-related defects?
– What if they were wrong and I terminated two healthy, amazing little individuals? We had a number of incorrect, in-utero diagnoses (DS was not one of them), each outcome worse than the next. It turned out that my boys are fine… developing on the low-end of the “normal” curve… with Down syndrome.