“Lisa, after reviewing your ultrasound today, I am 99% certain your child will be born with Down Syndrome.” The only way to know for sure is by doing an amniocentesis. Some of the risks associated with this are miscarriage and or infection…..based on how far along you are we will need to know if you want to terminate this pregnancy in the next three days…
I do not think I’ve ever cried so hard or so much until the day of my 22-week level two US. It was the next step to determine if our child truly had Down Syndrome. This day is a day I will never forget. I can still see the room, the doctor, everything about this moment in my mind like it was yesterday. The idea of my child having Down Syndrome and listening to the doctor talk about my 72-hour timeline to determine if I was going to terminate my pregnancy or chose to keep him. In my mind all I could see were the pictures of my little peanut moving around in my tummy from all the US I had thus far, including the one I had just minutes before the doctor walked in. My heart was hurting for my baby, for my family.
Not understanding what this all meant and having little knowledge about Down Syndrome I asked the doctor what this meant…
This means your child will have some type of cognitive delay. He may not crawl, he may not talk, he may not walk…or he may be as highly functioning as a child with this diagnosis can be. Children with Down Syndrome may have problems breathing, may choke more than other children. 50 percent of children with Down Syndrome have heart defects. Some of these heart defects may require immediate surgery upon birth. You will need to see a cardiologist to make sure his heart is ok and will not need immediate surgery upon birth.
I left the doctor’s office that day broken. Grieving the child I thought we were having, and trying to accept the child we were having. I was sad, angry, confused, anxious, depressed…I was spiraling. I was so angry with God that he was doing this to my family, to me. This is not what I prayed for. What did I do so wrong to deserve this. I prayed so hard and so many times begging God to fix my child. Begging him not to do this to us.
I began to research all I could to prepare myself and my family for the day baby was born. Every link that popped up just solidified what the specialist had told me. In addition, I learned that he was going to look different. His facial characteristics, flatter face, upward slanted almond shaped eyes, small stature, low muscle tone, and some degree of cognitive delay. I could not continue reading, I was spiraling into a dark place.
Talking with another mom was a hard step for me to take. In my mind it meant I was accepting this diagnosis and I wasn’t ready to do that. I tried to talk to a few moms, but every time I talked about my baby having Down Syndrome I just cried. I couldn’t accept this, God wouldn’t do this to us, he just wouldn’t. Oh how I prayed and prayed for my baby to be healed to be fixed. I begged God over and over to give me the child I had prayed for, I didn’t deserve this.
Myles was born October 16th, 2021. As we celebrate his one-year birthday today all I want to do is cry. Everything my doctor told me at my 22-week US is true, it can all happen, but it’s not what she said, it’s what she didn’t say.
When you look into his eyes you will see beauty like you have never seen before. His smile will calm your fears and your anxiety. His love is unconditional. He may take longer to do things, but the journey is healing for all who embrace it. He will teach the world so much. He is not a defect, but a gift. God did not make a mistake when he created him, “He is fearfully and wonderfully made.” He does not need fixing or healing, rather God sent him to heal each of you. To show you the world through his eyes. To see all the beauty around you, that you have yet to experience or embrace. God chose him for you and your family for a reason, a purpose. He is the answer to your prayers and so much more.
Myles I am sorry I put my faith in all things but God’s plan. I am sorry I prayed for you to not be you. I cannot imagine my life without you, I love you so so much buddy. You truly are everything I prayed for and so much more. Thank you, God, for choosing us!
To anyone out there that has just gotten the diagnosis that your little one may be born with Down Syndrome please trust me when I say it will be ok. I know it doesn’t seem like it right now, and I know it is scary, but the journey is more beautiful than you can imagine. The gift he or she will bring to you and your family, I can’t even put into words how amazing it is.
“I will walk by faith even when I cannot see. For we live by faith not by sight.” (2 Corinthians 5:7) Wherever you are on your journey you have a choice; to walk by faith or to let fear be your guide. Which will you choose?
