I Never Considered Ending My Pregnancy Because of Down Syndrome


Over the past few days there have been numerous news stories and blog posts regarding Iceland and their termination rate of Down syndrome. I felt compelled to share my story as well since I am the proud mother to an 11-year-old son who has an extra chromosome. It makes me sick knowing an entire country is trying to get rid of Down syndrome. I can’t imagine my life without Joey in it; he brings so much joy to our lives. Without Down syndrome, our world would not be the same.

It was 2005, I was 23 years old and a newlywed when I held that doubled lined stick in my hand. After being married less than two months, we were already expecting our first child. I walked out of our bathroom with the pregnancy test while my husband was in our bedroom watching a New York Yankees baseball game. The look on his face was priceless!

The first few weeks of my pregnancy were “normal,” nothing besides some nausea. Right around the time my small baby bump formed, it was time for me to go get my 14-week ultrasound. I laid on the table in awe and loved seeing my baby for the first time on the monitor. I fell in love instantly.

My ultrasound tech, however, seemed concerned. I knew my baby was alive and had a strong heartbeat. My heart sank as my brain raced wondering what was wrong. She left the room and brought in a doctor who did another ultrasound.

He didn’t say anything to me until he was done, then he looked at me and told me my baby had multiple markers for having Down syndrome: short arms and legs, barely any nasal bone and the nuchal thickening was so abnormal it was actually considered a Cystic Hygroma or a fluid-filled sac. I sat there in shock, I couldn’t say anything. I felt the tears welling up in my eyes but remained silent.

The doctor then told me I needed to speak with a genetic counselor to go over my options. He led me down a hallway with cheerful pictures but the only thing I could do was silently cry as I walked. I sat down in the genetic counselor’s office. She was sympathetic and started giving me photocopies of various information on Down syndrome and then mentioned getting genetic testing done. I had the option of getting either a CVS or an amniocenteses. CVS could be done as soon as possible, with the amnio I would have to wait a few weeks; both would have the same results. She also told me if we decided to do the testing and the results were positive, we had the option of ending my pregnancy.

After my appointment, I sat in my car in the parking lot and cried. I felt as if I was the only person left on Earth; it was one of the loneliest moments in my life. I finally mustered up enough strength to drive home.

 

I decided to schedule CVS testing, knowing no matter what the outcome was, I would continue my pregnancy. Down syndrome or not, this was my first child and I was going to love this baby no matter the number of chromosomes.

It took a few days for the results to come back, the doctor called me at home with the results. I had just gotten home from work and looked at the caller ID, my doctor was calling from his house and I knew doctors only call from home with “bad news.” He told me the test was positive for Down syndrome and I was having a boy.

I went into complete and total hysterics. My husband wasn’t home from work yet and I had just received the most devastating news of my life and I was home alone. I tried calling my husband and he didn’t answer, I called my mom who was 12 hours away in Ohio. She calmed me down and told me to call my mother-in-law who was a bit closer. By that point, my husband came home and my in-laws came over. We all sat together in silence, trying to absorb the news.

As the weeks and months went on, we focused less on the Down syndrome portion and more on the fact we were having a baby. We still educated ourselves on Down syndrome, I read every book I could get my hands on. At times, I was perhaps obsessed over not knowing what other health problems associated with Down syndrome my boy could have. I actually had to stop reading and focus on him as a person and not a diagnosis. By the end of my pregnancy, we had gotten over the “grieving process” of knowing our baby was going to have Down syndrome. We were excited to have a baby!

On March 14, 2006, after an 18-hour hard labor, I delivered a healthy baby boy who was truly perfect to us, extra chromosome and all. My mother-in-law said it best, “He’s perfect!” My doctor who delivered Joey told me a few years later Joey’s birth was one of her most memorable births because of the way we loved him instantly and celebrated his birth.

I often look back on my pregnancy with Joey and believe we were chosen to be his parents. I’m so grateful that God chose us. The love Joey gives us is amazing and I can honestly say there’s never a dull moment in our lives thanks to him.

Pslam 139:13-14 says, “For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful; I know that full well.”

A version of this post appeared on Her View From Home.

Follow this journey at Raising Joey.

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