We found out about our baby’s diagnosis in July before he was born in December. I wish I knew then what I know now about what to look for on a sonogram. I would have been spared the wondering for two weeks until the results of the amniocentesis came back and I received the results by phone. I was glad to have the chance to know ahead of the delivery, but my mother was surprised that I preferred it that way. Every parent and situation is different. A woman who is a good friend now, but whom I never would have known if not for our shared experience told me: “We found out the night that [our baby] was born that Down syndrome was suspected. I suspected something was different when I saw his foot across the delivery room while he was being evaluated with his Apgar scores. Something struck me about the space between his largest toe and the one next to it. I am glad I did not know while I was pregnant. I would have been extremely stressed wondering what his condition would be at birth. Not knowing allowed me to have a healthy and relaxed pregnancy which probably benefited [his] health.”
My feelings were just the opposite. This (my 3rd) was the most relaxed pregnancy I had – – I had irrationally worried all through my earlier pregnancies with every mouthful of food I ate that some preservative might give my child brain damage or another difficulty of some kind, that if I took a misstep I would harm the baby somehow. This time we knew what we were dealing with. All the prenatal tests leading up to the amniocentesis had indicated there were irregularities. And even though there were lots more tests and letters from specialists and geneticists, I felt relieved because with the results in hand I could deal with this in real time. I was happy and content because I knew we would be ready. This was going to be my son – – I didn’t want to face challenging news in the delivery room and be disappointed in him. I wanted to meet him with joy. I wanted to be glad to see him!
So that is why knowing ahead of time worked for me. Understanding that he had this condition was normal to us by the time he was born, so the delivery and “getting to know you” periods felt normal. The team of specialists standing by, whisking him off for a sonogram on his heart before I’d hardly even laid eyes on him, were what I’d expected. No confusion, no surprises, no alarm, just my long-awaited, and what turned out to be my second, 10 pound pink son.
This doesn’t feel like a remarkable story to me because I lived it. I don’t know how other families have heard or felt as they experienced a similar evolution of events unfolding. I do know that for one hour after I got the news that genetic testing showed definitively that my expected baby would be a boy with Down syndrome, I cried my eyes out, and then I went to the backyard to check on my other children. With bouncing golden curls my two-year-old ran up to me extending his pudgy arm, holding a dandelion flower. That beautiful little face, the love in his eyes and his excitement to share dried my tears as I thought with satisfaction of my unborn child: “This baby will potty train and show delight on its face.” And with that I was through grieving. Those two things were enough for me. I was blessed to be able to feel the unknown and inevitable future roaring toward us with at least some positive outcomes and whatever else might be, there would be moments like these where the sun would shine and our family would find joy together.