Down Syndrome is the most common genetic condition. One in every 691 babies is born with DS in the United States translating to around 6,000 births every year. There are more than 400,000 people with Down Syndrome in the U.S.
How I️ wish someone would have posed Down Syndrome as what it truly is instead of a negative risk. I have issues with the phrase “risk of having a baby with Down Syndrome.” The word risk implies negativity and elicits similar feelings I would have when hearing the phrase “risk of cancer.” And upon hearing that our Panorama genetic blood screen came back with a high RISK of T21 when we were about 10 weeks pregnant, I️ fell apart.
I️ couldn’t see anything but utter despair. Negativity. All of the defects and limitations taught in nursing school came rushing back. Dated statistics. Old limiting information. All of the “can not’s”, “will never’s”, and stereotypical inevitable and unavoidable predisposed complications.
Never tell me the odds.
The truth about the odds of any likelihood of developmental or medical event is that, while I appreciate looking at the wide range of possibilities for my son, never tell me the odds. He will be his own person with his own strengths and weaknesses like everyone else. We have familiarized ourselves on what to watch for on the medical front and we are giving him every opportunity to tackle his development and succeed with every task before him. We have gotten to this place as a family. I like where we are. At the initial time of hearing the news though, I wish I️ had been told Down Syndrome is not negative nor is it unnatural. Down Syndrome has been recognized as a naturally occurring genetic/ chromosomal anomaly first described in 1866. Our genome in all forms is beautiful.
13 For you created my inmost being; you knit me together in my mother’s womb.14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. 15 My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth.16 Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.17 How precious to me are your thoughts, God! How vast is the sum of them! 18 Were I to count them, they would outnumber the grains of sand— when I awake, I am still with you.
God makes no mistakes- we do, but he doesn’t. I fought with guilt for a while carrying the blame in my heart for his possible and likely diagnosis; I was lumping T21 in my brain with a preventable diagnosis like alcohol syndrome. Our son was knit together within me exactly as he is supposed to be.
The timing we discovered our chances of Henry being diagnosed doesn’t matter. Henry is not a risk. Henry is not Down Syndrome. He is Henry who happens to have T21. He is our son and at no time would anything deter us from giving him every chance to live the fullest life possible.
We received Henry’s official T21 after he was born. We chose to forego all confirmation testing while we were pregnant. By the time we returned to Alabama we were too far along to have a CVS and our safe window was closing to do an amniocentesis. We agreed a prenatal diagnosis wouldn’t change our plans, and I didn’t want to cause any possible harm (even though the risk of harm was slim) to our baby from the testing.
My husband James even said after an especially disheartening high risk maternal fetal appointment, “I want us to do everything we would do exactly if we had no idea of the different possibilities for our baby’s genetics.” So we shared the news of our pregnancy with joy and kept the unproven possibilities to ourselves.
We were expecting!
We were due 1/12/16!
We were having a baby boy who was not a risk but a blessing!