Sage
A Trisomy 18 Angel
Sage Elyse, our princess unicorn girl, was prenatally diagnosed with Trisomy 18. Before confirming her diagnosis, her local children’s hospital had made plans with her to repair her life-threatening heart defect, an interrupted aortic arch with multiple VSDs. However, after an amniocentesis confirmed her Trisomy diagnosis, they no longer saw her as a candidate for surgery. They told us we would get 24 to 72 hours with her (until her PDA closed) if she survived birth. We tried to find peace with these circumstances, trusting that our doctors knew best. We witnessed a miracle at her birth; she took her first breath on her mama’s chest after being limp and purple with no support offered by the medical staff. She continued to persist and was sent home 2 days later to hospice. Her grandparents had to go buy a car seat as we had been told to prepare not to take her home. Like the miracle girl she was, her PDA remained open beyond the typical timeframe.
Despite her growing and fighting, her local hospital continued to deny her medical care. When she was one month old, we began seeking out second opinions, and God threw the door wide open for Sage to receive a full heart repair at Dell Children’s on January 7, 2021, just a week after turning 3 months old. Sage came home 2.5 months later with a trach and a g-tube, ready to live her best life!
For the next 2.5 years, she enjoyed her family, vacations, making friends, swimming, becoming a big sister, watching Rainbow Rangers, reaching developmental milestones, and so much more. Sage lived an incredibly full life and gave and received love and happiness from all who had the blessing of knowing her. She went to her eternal home at 3 years, 1 month, and 12 days old, and we are comforted in knowing that each passing day is one day closer to seeing her again.
Her infectious joy and adrenaline-seeking spirit live on in our family and are part of her legacy. Her younger sister loves to include her in every possible way, and we think of her whenever we see a unicorn.
