I was so happy! I was pregnant, and this would be my partners’ first child. One day, I went to see my doctor and it all came crashing down on me like a 200-pound weight. I was told that my baby girl Mariah would not survive. The doctor said “She has Edward’s Syndrome, also known as Trisomy 18.” Trisomy 18 is a condition that is caused by an error in cell division, known as meiotic disjunction. When this happens, instead of the normal pair of chromosomes, an extra chromosome, 18 results (a triple) in the developing baby. This disrupts the normal pattern of development in significant ways that can be life threatening, even before birth. A Trisomy 18 error occurs in about 1 out of every 2,500 pregnancies in the United States, and 1 in 6,000 live births. The number of total births is much higher, because it includes a significant number of stillbirths that occur in the 2nd and 3rd trimesters of pregnancy. (Trisomy 18 Foundation, 2019)
I felt hopeless when I got this diagnosis. I did not want to believe that Mariah was not going to make it. As time went by, I put my faith in God. During this time, I also experienced domestic violence from Mariah’s father. I was abused every day and it was hard trying to protect my unborn child and myself. I tried to do what was best for me.
I went into labor at 27 weeks and my heart broke knowing that the chances of my baby girl surviving were very slim. I gave birth at IU Methodist Hospital and watched my little girl every day. I picked her up, talked to her and gave her baths until God called her home.
I had never watched anyone die before, and I had never lost anyone before. It hurt so bad seeing my baby girl, the love of my life die. She fought for her last breath. It was a painful experience.
Trisomy 18 took my child, and I do not take life for granted. I am a Grassroots Maternal and Child Health Leader, and I have learned how frequently babies die before their first birthdays.
I will work to decrease those numbers by creating awareness in my community. We must come together to support women and children, and provide resources for mothers experiencing grief. I will honor my daughter’s life, by advocating for the lives, and health of mothers and babies.
Trisomy 18 Foundation. What is Trisomy 18? (2019).https://www.trisomy18.org/what-is-trisomy-18/