1:18. That was the odds given to us that our second child would be born with Trisomy 21 (better known to the world as Down Syndrome). 1:18 which actually equates to a 5% chance, but is vastly different from the 1:10,000 odds that are typically seen on those first-trimester blood work screenings. 1:18. This ratio consumed me as I frantically searched Baby Center posts for others with my odds and their outcomes. This little ratio also immediately changed my pregnancy journey, mainly because of how I was suddenly viewed by my doctors. I immediately became a high-risk case, and with that came many tests and procedures that I didn’t necessarily want to do.
My husband and I were fortunate to have already discussed our feelings about raising children with special needs, and we both knew that termination would never be an option for us. We would raise our little guy or girl no matter what the outcome, and so “no, thank you!” we did not need an Amnio or a CVS test. So we waited. We waited for the big 20-week ultrasound where they would look for markers as the baby became more developed.
A whirlwind of ultrasounds ending with an unfortunate moment where I was alone with a high-risk doctor looking at my scans. This doctor solemnly told me that he suspected heart problems specific to Down Syndrome. He treated me so horribly for not agreeing to do an Amnio. I left in tears and immediately called the amazing high-risk doctor that had helped us at the hospital we used for my first birth. She gave me a 5:00pm appointment for the very next day – a Friday (bless her heart!) and spent almost two hours scanning and measuring. She did not see anything of concern, and we decided to trust her opinion. We opted to not see a heart specialist at Yale as recommended by Dr. Made Me Cry, and still, we waited.
As we waited, now adding possible health concerns to the mix, I continued to obsess research information. Through my googling, I learned of a new screening test called MaternitT21. Now a familiar test for pregnant women across the country, I was actually a pioneer (back in 2012) and was the first patient at my hospital to take it. This, too, involved more waiting, and due to the newness of this test, the doctors weren’t so confident that the information gleamed would be very accurate.
My husband and I had long discussions into the night. Thinking about the ways our lives might need to change and preparing for a different kind of future. I had heard that for some people who know that their baby will be born with a disability, it is comforting to write a letter to their families and friends ahead of time so that when the baby arrives, people are still joyful rather than unsure of what to say. I began to write our letter in my mind, not only as a means to prepare but also as a way to share all that we had learned over the past few months of waiting.
After what seemed like an eternity, my cell phone rang in the middle of the day. I’d be lying if I didn’t admit that I took the call right during the middle of teaching a small group of children! Our genetic counselor had called from her vacation to give me the good news that our test was negative. I felt many things at that moment – relief, joy, and even the tiniest bit of sadness. As crazy as this may sound, a small part of me mourned the loss of a path that I had grown to accept was ours. I had come to love our baby for who he or she was, and I had to let go of a piece that I had just started to embrace.
I recall saying to my husband, “we should write a letter anyway.” Because in those long months of waiting, we had learned so much and became so much more than we could have ever thought possible. We had grown as parents, grown in our faith, and the little annoyances that are very much a part of pregnancy were so trivial compared to what we had just experienced in our hearts. The letter would have been simply stated and probably went a little something like this.
Dear Friends and Family,
In a few months, we will give birth to our second child. We will find out if the baby is a boy or girl. The doctors will let us know if he or she is healthy. Good health is one of the most valuable gifts we can receive, and we will not take this news for granted. We will not know what the future will hold for this little blessing. Perhaps, he or she will be left-handed. Perhaps they will be a picky eater. There is so much we will never know, and none of it really matters. Because most importantly, we will know that this baby is ours to love and cherish. This baby will be a part of our family forever and loved most unconditionally.
Love, Shannon, and Chris
As Down Syndrome Awareness Month comes to a close, let’s give a shout out to the awesome mamas bringing these beautiful children into the world. I am sure they have some pretty incredible stories to tell of their own personal journeys. Please feel free to share your own experience.
