As I sat alone on my hospital bed the day after my daughter was born, allowing everything that had just happened in the last 24 hours attempt to sink in, I ignorantly began the list of 'she will never...' You know, "She will never drive a car"..."She will never go to a prom"..."She will never marry"...
This was ignited by the hospital staff just hours after she was born. Hospital protocol was not followed (I checked into that later) and it was announced to us by a nurse taking my daughter's vitals and checking the APGAR score saying, "She looks as if she has Down syndrome." Just like that. Nobody gently breaking the news to us. Just blurting it out minutes after she was born, almost as if talking to herself, but in a loud announcer voice. Our entire family was there - all four of my sons, my husband, and my sister. We had no words.
We were a little shocked of course, but still happy that she was here. Soon, a doctor was summoned (I had a midwife delivery) to explain to us that they would be taking my new baby up to the NICU to check for heart (over 50% of people born with Down syndrome have heart problems) and other issues. We were still happy. And that seemed to bother some of the hospital staff.
Soon, I had several nurses and a couple of doctors bringing in the negative, even after it was discovered that my daughter had no heart problems or respiratory problems. They began with, "You need to understand what this all means..." and "In all probability, you will not be able to breastfeed her, as babies with Down syndrome have low muscle tone and large tongues, which makes it nearly impossible for them to latch on and suck hard enough." I replied, "Give my baby to me." And that's when I started my own "She will never..." list in my head. (I did breastfeed her for 2 1/2 years!)
I really hadn't done a lot of research on Down syndrome, though I did know that my chances for having a child with DS were almost as high as they were for me miscarrying. I had 5 miscarriages throughout my child-bearing years, and at my age, I thought having an amniocentesis would secure that fate. I did however, have an ultrasound, but they were not sure of the gender, due to her position at the time. Nothing showed up on that ultrasound to lead them to believe there was any issue at all. I was as prepared as anyone could be, knowing those chances.
My hospital experience was very negative, but we were so happy for our surprise-later-in-life baby girl. I was more scared about having a girl than the fact that she had Down syndrome. I had four boys and I knew how to do boys. There was absolutely no pink that existed in our home until we brought her there.
I will continue the rest of this story in the next blog. If you have a child with Down syndrome, I'm sure you can relate with at least some of what I've shared. Why is it that the world seems to want to tell us our children are so different and can't do certain things?