Being able to share my daughter’s story with the world brings me so much joy. She has changed me tremendously for the better and I’m forever grateful for each moment I was able to share with her. Since I was a little girl, I’ve been obsessed with the name Desi, so I knew it would be a perfect fit for my little angel baby. Desi Love Jones was diagnosed with Trisomy 18 at 16 weeks gestation. I went in for a routine appointment at 12 weeks to monitor my subchorionic hematoma which led to an urgent referral to a maternal-fetal specialist because the ultrasound tech seen “something” on the scan. I was instantly filled with anxiety. This was my third pregnancy. The other two resulted in early miscarriage so I needed everything to be okay with my baby. I quickly scheduled an appointment with the specialist and was seen one week later.
At my appointment, the provider identified that Desi’s heart appeared to be forming on the right side of her body, and her legs were significantly deformed. In addition to those findings, her nuchal thickness was over the average range. He suspected Desi had some sort of chromosomal abnormality. Since the type of genetic issue could not be identified by ultrasound alone, I was asked to take a blood test and return in a couple of weeks to see if her development had changed in any way. I couldn’t hold back tears on the way to the car. My poor baby. A million questions flooded my brain. Can she live with her heart on the opposite side? What condition does she have? Is Dextrocardia curable?
After two weeks of waiting for my prenatal genetic screening to come back, Desi Love was diagnosed with Trisomy 18. To gain knowledge of this condition, I scoured the internet and everything I read “not compatible with life”. I was heartbroken at the thought of losing her. Since my care was no longer routine, I remained with a specialist who closely monitored her condition at each appointment. Each day I would listen to her heart on an at-home doppler and rejoice every time I heard it. I was informed that she would pass in-utero or shortly after labor. I knew each day with her was a gift and I would treat it as such.
I decided that I would celebrate her. I captured videos of her movement as she grew, sang to her, prayed to her, and talked to her about my day. Desi Love became an inspiration to me each day and taught me to treat life as a gift. Everything that I complained about before seemed too small, I just wanted to hear her heartbeat on the monitor. That was my ONLY ask for the day. When I begin to feel her kick, I was able to discontinue using the heart monitor because I knew she was okay. That was an amazing day for me! She was so active. I’m sure she was trying to tell me to stop singing Celine Dion to her every day, however, I know she was a fan like her mommy. 😊
At 32 weeks along I noticed significant weight gain, swollen feet, and shortness of breath. I was diagnosed with severe polyhydramnios which is a condition in which you have an excessive amount of amniotic fluid. We discovered Desi had a herniated diaphragm and her stomach had developed in her chest cavity. She was unable to ingest large amounts of liquid which led to my condition worsening. My provider suggested an amniocentesis to drain some of the fluid so I would be more comfortable and to decrease the risk of other complications associated with this condition. The following day, which was Valentine’s Day, I went into labor and Desi Love Jones passed away.
I choose her middle name “Love” before I learned of her passing. What are the chances she would pass on the day of Love? Makes her middle name so much more special to me. She was born straight into Heaven. Desi was born sleeping at 2 pounds, 7 ounces, and 13 inches long. In my eyes, she was perfect. I spend the first moments with her staring at her, in owe of how special she was. I kissed her all over her face and told her how much I loved her. She had a full head of beautiful black hair like her daddy. Her hands were clinched, and she had three perfect toes on her left foot and five toes on her right. I miss her every single day and I thank God she was with me for 32 weeks. I would give the world to feel her kick me one more time or to sing to her again. To honor her, I will spend the rest of my life making sure to treat life as a gift and to appreciate every moment I have.
Desi, I love you so much and I thank God for choosing me to be your mom. Until we meet again in Heaven.