It’s taken me some time to muster up the courage to write this. I’ve seen other strong mothers and parents on here share their stories, and they have inspired me to continue to share mine.
I first joined the Trisomy 18 Foundation private Facebook group when we found out about our daughter’s Trisomy 18 diagnosis at 21 weeks. I connected with other mothers who so bravely shared their stories with me and prepared me for what could happen with our daughter, Emylen Amara.
Our daughter was stable for most of our follow-up appointments, and we had the hope of meeting her alive at full term. On August 6, at 35 weeks and 5 days, my husband and I went in for our final growth follow-up ultrasound. We were expecting it to be another routine check-up. Instead, the doctor informed us that Emylen’s heart had stopped.
Although we knew Emylen was at high risk for stillbirth due to Trisomy 18, it still did not minimize the shock and pain we felt. We were admitted to the hospital on the same day to be induced.
On August 8, Emylen Amara was born sleeping. I feared the silence after delivery, not hearing her cry, but the room was filled with so much love from our doctor, our nurse, my husband, and my mother instead. They praised how beautiful Emylen was as the nurse put her on my chest, and my husband was able to cut her umbilical cord. She, indeed, was beautiful. A head full of hair and a button nose. We memorized every bit of her. She was 3 lbs, 3.5 oz, and 16 in. She was small but mighty.
We did everything possible to ensure she had the best chance at life. She only knew the comfort and safety of my womb, and she only felt love. She was loved not only by us but also by our family and friends. Although her time with us was short, she had already touched so many lives.
We’re still in the trenches of grief, but we know that eventually, we will be ok. We miss her every day and can’t stop thinking about her.
I hope that in sharing my story, those who are struggling may also know they are not alone.
