Trisomy 21 - Nevaeh's Story

My experience with Trisomy 21 took me on an unexpected journey during my first pregnancy. My pregnancy started out normally, and my husband and I were excited and looking forward to being parents. The first indication anything was wrong was when my first trimester screening came back with an increased risk of Trisomy 21. We were shocked and worried. I was only 25, and there was no history of any Down Syndrome or any other problems in our family.

My doctor recommended that we go to a specialist and have a level II ultrasound done. During my ultrasound they found several markers for Down Syndrome. The major one being that my daughter had duodenal atresia – a blockage in her stomach. The second marker was that her femur bones were very short. They also told us she could have a possible hole in her heart. They offered us an amniocentesis on the spot. A few days later, what we suspected was confirmed – our daughter did have Trisomy 21.

The emotions I went through were awful. I was mad at God. What did I do to deserve this? Surely I was paying the price for something awful I did in the past. I was devastated and pictured a life of caring for a special needs child. I was afraid. I was sad. Yet there was part of me that rose to the challenge. This was still my child. And I would show her the love and still be her mother.

I started researching everything I could. I joined several chat groups of parents with Down Sydndrome. I forged relationships with the parents. I met some of them and their children in person. They helped me learn and see that first and foremost – this was still my child. She would still meet all the same milestones as any other child, just at her own pace. I learned from them that the scariest of things are the unknown. When you learn about the unknown  - they become less frightening.

Our daughter ended up being born ten weeks early. I instantly fell in love with her. It didn’t matter that she had an extra chromosome. Looking back, I am glad I knew before her birth, as I could prepare myself. Sadly, our daughter passed away six weeks later from several complications.

After she passed away – I was so ashamed at my initial feelings and reaction of when I found out about her Down Syndrome.  I would rather have her here with me with an extra chromosome – than not at all. Again – I felt like I was being punished by God. The same parents I met online embraced me and helped me get through it. I am still friends with many of them yet today.

Our daughter Nevaeh taught us so much in her short time here on earth. I think the thing I learned the most from her was about unconditional love. I also learned so much about Down Syndrome and it has become a passion of mine to help parents going through the initial shock of finding out their baby has it. It is not a life sentence of doom and gloom. It is a glorious gift that if you choose to open your heart and embrace it – will change your life for the better.