I never really knew that parents felt so many emotions when their child received a Down Syndrome diagnosis. My mother-in-law, who has a 24-year-old son with Down Syndrome, asked me what did I think they felt?
Honestly, I had no clue and no response for her. I’m not new to the Down Syndrome community. My husbands younger brother has Down Syndrome and being a Pediatric Oncology nurse I have worked with more children than I can count who have Down Syndrome. All of these children are so loved and their parents made it look so effortless.
Yet, I was still filled with so much grief when I found out.
We decided to do the Non-Invasive Prenatal testing (NIPT) again for this pregnancy. We did the exact same test with my daughter and honestly it was only because we wanted to find out gender early. My doctor even tried to steer me away from doing this test because I wasn’t considered “high risk.” At 28 years old, the geneticist told me I had a 1:1000 chance of having a child with Down Syndrome. To which my husband replied to her, “wow, we had some pretty rare sex.” Insert my flushed face at that conference table. Ha!
The phone call came early afternoon. Hayden was down for her nap and I was so tired I decided to lay down as well. I felt the phone vibrating on the bed and contemplated whether to ignore it. I decided to look and see the number calling and realized it was my OB office. I sat straight up out of bed because I knew our NIPT testing had come back and that meant our gender results were in. I should have immediately known something was wrong because it was the doctor calling with the results. When I received Hayden’s test results it was a nurse who was able to relay that information to me. The phone conversation was a blur and the doctor said something along the lines of, “I’m sorry but your testing has come back positive for Trisomy 21. We would like to schedule a follow up ultrasound for you.”
Excuse me? What? Dallas’s younger brother has Down Syndrome.. It doesn’t run in our family. Is this really happening twice? I’m so young. I’m not even suppose to be at risk for this.
I’m going to be honest, I was devastated. All I could think about was how I wanted to see my son go to college, get married, and have grand babies. These are definitely not things mothers think about when they are pregnant with their infant son. Then the pediatric nurse in me really started kicking in. congenial heart disease, hypothyroid, leukemia, hypotonia, duodenal atresia, G-tubes, NG feeds, and oxygen. It’s one thing for him to have Down Syndrome but it can get serious pretty quickly. They have so many health concern risks. My boy, could I really watch him go through an open heart surgery or even my worst nightmare of him getting leukemia one day? Would we spend weeks or months in the NICU after delivery? Would he be on oxygen everyday? Would we be going into debt from medical bills?
All of these thoughts swirled in my head and it was a solid four hours before I was even able to reach Dallas by phone to let him know. The longest hours of my life. He had flown out of town the day before to interview for a job and it was an all day ordeal. He was unreachable and wasn’t even going to be back home for another day. When he finally called me, I was at such a loss for words on what to say. I could hear the tears in his voice. He’s watched his brother go through open heart surgery twice. Fifty percent of children with Down Syndrome have congenital heart defects. How could it even be fair that he might have to see his son go through the same thing?
At some point Hayden had woken up from her nap because I remember the movie Trolls playing. It was her favorite at the time. My mom and mother-in-law had came over to pray with me. I couldn’t move off the couch and our house felt so dark. I’ve never felt so close to Satan and God all at once. It felt like I was in a dark pit and not our living room. I just sat there thinking, God I know you are here but why are you letting this crush me? At the end of Trolls, the main character, Poppy, is depressed and loses all of her color because they are trapped. Branch starts singing to her to bring her back to herself again. I will never forget this scene coming on and feeling so relatable to Poppy. Still to this day, that scene is a trigger that sends me back to how devastated I was the day of diagnosis.
We made our appointments through Vanderbilt Fetal Maternal Medicine (MFM). Our 14 week ultrasound showed positive soft markers such as Nuchal fold, pyelectasis, and a bright spot on his heart. Our geneticist explained that all of these in conjunction with our NIPT testing made his chance of having Down Syndrome ten fold. We scheduled follow up ultrasounds for the rest of the pregnancy to monitor for complications until delivery.
We prayed for healing; We prayed for health.
This can be a very conflicting topic and I do understand others view points on this. Dallas and I firmly believed that God has the power to do anything. Our whole family was praying that our son wouldn’t have Down Syndrome and be medically healthy. I was extremely conflicted to pray that he wouldn’t have Down Syndrome. God knit my son together. He planned this long ago. Who am I to pray against God’s will for my child? I want anyone reading this to know that it’s not wrong to pray for these things. I did end up saying a few prayers that he wouldn’t have DS but only after my husband told me it wasn’t wrong to pray our sons life wouldn’t be harder. Dallas has seen first hand from his brother that DS has it’s challenges. Things don’t always come easy for them. People can be hateful. All we wanted was the best possible life for our son.
We declined to do the amniocentesis and Emmett officially received his diagnosis at birth. We trusted that God makes no mistakes and I was reminded of Isaiah 25:1. “Lord, you are my God; I will exalt you and praise your name, for in perfect faithfulness you have done wonderful things, things planned long ago.” My story might not be relatable to yours. You might not have received a birth or prenatal diagnosis. Maybe your child’s diagnosis was when they were five years old and you were told they have autism or another type of special need. Maybe you find out your precious baby, who is now a teenager, is addicted to drugs which leaves you desperate to find a way to pull them out of their addiction.
Whatever your struggle or circumstance is, we have something in common. This wasn’t a planned route of parenting or road we ever intended to go down. This path is hard and it catches you off guard. A constant reminder that this life is out of our control and truly in God’s hands.