By Genevieve Jobst
Mommy to Genesis
Congenital Heart Defect, Trisomy 21, premature birth
October 15, 2018 – February 4, 2019
I received a prenatal diagnosis of Trisomy 21 (Down syndrome) around 14 weeks pregnant with my daughter, Genesis. From there, we had many anatomy scans and discovered she also had a congenital heart defect that would need to be repaired at a few months old, as well as duodenal atresia that would require surgery within the first 24 hours after birth. I toured the NICU ahead of time just to prepare myself for what life might look like.
Genesis was my rainbow baby, and even with all of her diagnoses, I still hoped she would have a full life. I imagined her meeting milestones on her own terms, playing and laughing and talking, celebrating birthdays and holidays, wearing girly outfits and hairbows — and showing me the world from a new perspective.
She ended up being born five weeks premature — something that was always a possibility but still unexpected. NICU life was a completely different start to motherhood than I ever could have imagined, but I was blessed to spend so much one-on-one time with her and to meet so many NICU nurses who cared deeply for both of us. After 7 weeks in the NICU, Genesis came home, spending Christmas with us.
On January 4, 2019, everything changed. Genesis started having significant breathing issues and was rushed by ambulance to the hospital. She went into respiratory failure and was fighting lung issues, which she never had a problem with before. Pneumonia, then infections, and breathing difficulties. She coded, suffered a stroke and was having seizures. She was placed on ECMO and did come off, but her lungs were filling with blood. We made the heartbreaking decision to remove life support on February 4, 2019.
The day we found out that we would be redirecting Genesis’ care, we were told that a photographer from On Angels’ Wings could come and take photos. I will never forget that moment, or the kindness behind it. These pictures mean the world to me. They are heartbreaking, but they beautifully depict the love that surrounded us on her last day.
We received autopsy results in April 2019 where we found she had lung necrosis caused by being premature, and would have the same outcome regardless of when she went into respiratory distress. We were so worried about her little heart from the beginning, but was strong and gave us the 3.5 months we had with her. It was her lungs that just weren’t strong enough to survive.
Genesis’ diagnosis turned me into a huge advocate — not only for her, but for other children with Down syndrome. It opened the eyes of everyone around me to what that diagnosis really means. It shifted my perspective about life, and about what truly matters.
I hope that my future continues to be filled with people who were touched by her journey — people who are placed in my path because of her. I also hope to continue being a voice for families like mine through my volunteer work at St. Louis Children’s Hospital and with OAW for years to come.
I’ve participated in OAW’s Pregnancy & Infant Loss Remembrance events in October each year — often on her birthday. I went through the Grief Recovery program. I’ve been to the annual family recipient picnics and Santa mini-sessions. The ongoing events have allowed me to keep honoring her and connect with other families that understand.
Today, I serve as the St. Louis Area Coordinator for On Angels’ Wings, working directly with hospitals to help organize emergent photo sessions like the one I received in 2019. This role has allowed me to share Genesis’ story with so many people — especially when I helped recruit volunteer photographers at a local photography conference.
This work has given me purpose in my pain. I felt like I lost my purpose when she took her last breath, and helping other families has allowed me to honor her, tell her story, and make sure her impact is never forgotten.
OAW has been instrumental in keeping Genesis Makenna’s memory alive, giving me a place to heal and a way to give back to families like mine. Being directly involved in this work — the same work that meant so much to me during my darkest moments — has brought healing and meaning I never expected.
