Insomnia struck Colin and I at the same time in the wee hours this morning. It landed us in a chat over a new OK law that would protect life but also disallow suing a doctor for not sharing suspicions of birth defects. In this litigious age it will likely not stand. I am not sure if it even should. There are so many issues involved, all centering around Colin's questions last night. Did we know? (about his health) Would it be better to know? What can we really know? What should we know?
I don't have those answers. We did not have those decisions in 1985. Newly married and newly in a foreign country and newly pregnant we knew only that we were having a baby. That was enough for us. The ultrasound was crude and the resulting image looked like stormy weather patterns. No matter, that was our baby.
After months of bed-rest and medication to stop the contractions that landed me in the hospital on my 19th birthday we met the most beautiful baby in the world. He happened to arrive with a litany of medical complications. No matter, he was our baby. We would deal with all that later, after examining that perfect swirl of dark hair and kissing those hands stretched in newborn surprise. There were songs to sing and rocking to do.
Priorities, you know. ; )
Would I have wanted to know? Not really. Despite months of pre-term labor, I was full of joyful anticipation which I would not have traded for a prognosis which could never define nor determine the person Colin would become. He is so much more than a label. Would we have been able to know that before we looked into his eyes?
We think we know so much these days. We test. We make predictions. We think our knowledge will save us. In fact some of that knowledge did save my baby. I will be forever grateful for that. But, I don't pretend to think that a lab sheet is ever going to give a complete picture of the mystery that is us. It reduces us to our data. We are so much more than that. We cannot know love on a piece of paper.
If you are given prognosis before you are given a baby, let me tell you this secret. Your world is about to rock. Your heart is about to break. And it's ok. It will mend and stretch and grow in ways you can't even begin to imagine right now. You come out in a better place. And you won't want to go back. I promise. Don't miss it.
Another mom who has learned this same secret.
Starry Sky Journal 
You got to meet and love your baby (supposed) defects and all. So many families do not get to share that love with their babies, their babies did not get to live this life. Either by “choice” or just an early death from their faulty genes. Thank you for sharing your message of hope, so many mothers only hear bad news. And they need this message of hope. People get to this earth in so many ways, and being unique is truly a blessing. I hope you guys keep on spreading the message about your experiences. It does make a difference!
I appreciate hearing your thoughts on this! I am the parent of a 6-year-old with Down syndrome. I did not “know” before she was born. I opted out of pre-natal testing, because I did not want to “know,” and because the testing was only to give me data to make a decision which I did not plan to make anyway.
But her birthday was a difficult day for me. I have often wondered what it would have been like, to know ahead of time. Would it have been easier on her birthday? Harder?
Your post just made me realize why her birthday was so difficult. I think the reason it was so hard, is because I was given a diagnosis before I actually held her, or even saw her. She was whisked away to the NICU, I was stuck in the hospital bed, recovering from a C-section. So the pediatrician came in my room and told me – he introduced the subject by saying “Well, I guess you didn’t have an amnio…” Then he told me she had Down syndrome. So I had a label for her, before I held her, before I looked into her eyes and met her, before I had a chance to realize how much I loved her. If only I had been allowed to hold her first, and marvel at her many perfections, then it would have been so much easier to learn about the challenges that lay ahead.