It is our honor to serve as the Rocky Mountain Coordinators! In February 2022 we welcomed Casey into our family. Casey is our second child and our first son. Early in pregnancy Casey tested at high risk for Trisomy 18. Weeks later his diagnosis of Mosaic Trisomy 18 was confirmed via amniocentesis. As many of you have done as you received similar diagnoses, we began to learn as much as we could. We quickly learned how little information or scholarly research there is about Mosaicism. What was available was primarily case studies that highlighted how Mosaic Trisomy 18 could affect any or all of his body as well as development. We were flooded with a mixture of relief about the possibilities as well as profound confusion as we had no way to prepare. (How silly we were to think we could ever be prepared) During this search for information we came across the registry. With our emotions still so high and our bandwidth at an all time low we chase to not engage in the registry at that time.
When Casey was born, he was immediately taken to the NICU for breathing issues. He had a pulmonary hemorrhage and despite the best efforts of the team caring for him he was simply too sick to stay at that hospital. On his third day after repeated attempts at strengthening his respiratory system we were transferred to Children’s Hospital of Omaha. That day we were confronted with the reality that we may not have the chance to ever take our baby home. On his fourth day of life, Casey began to rally in ways that shocked his entire medical team. Little by little he improved each day until he busted out of that NICU! Our elation was short lived as we bounced in and out of the hospital 5 times in those first few months. At 5 months old, once he had sufficiently grown, he had his VSD/ASD repaired. Every story and every kid is different but for Casey this was the key to unlocking his full potential. The strides in his physical strength and overall health following his heart repair again shocked us all. We continue to have lots of medical specialists on our team and we still are far more familiar with Children’s Hospital than we would ever want to be but he is doing phenomenally. He is also enrolled in an early intervention program with the school district that is tracking his developmental milestones.
Our family of 4 lives in Omaha, NE. Kevin is a nurse, and currently manages the Infectious Disease department at a local hospital. Jen is a teacher having taught both special and generaleducation, and currently works as a district behavior facilitator. Casey has an amazing older sister named Ellie who is almost four years old. Ellie is his best friend and they adore each other. 
