After nearly ten weeks of anticipation, we were at last set for our 30-week ultrasound, a day that brought me both joy and anxiety. Because of a protection problem, we were unable to obtain any scans for 20 to 30 weeks. That day, though, transformed everything. The technician who led our previous ultrasounds welcomed us warmly and led us inside. However, following a short discussion, the room became silent. When I inquired if all was well, she just smiled, switched off the screen, and exited the room. I looked at Giovanni, my fiancé, with tears full in my eyes and quietly said, “I just sensed something was off.
On that day, we were informed that our baby had important heart discretions and a probable genetic disorder. The phrase “no choice but to continue” resonated painfully in my mind as though his life had already been revalued.
The coming weeks were a haze. The amino confirmed that our baby had a syndrome, but details would remain unknown until birth. During an ensuring appointment, fluid was detected around his heart, suggesting potential total heart failure. The thought of losing our son became frighteningly touchable. Sadness was what we expected to be a happy time. What remained for us was only uncertainty.
Our hopefulness started to increase when we met Dr. Eleanor Ross, a pediatric cardiologist who identified multiple complex conditions: DORM, TOF, VSD, and Pulmonary Stenosis. Her e,pathy and attention to detail restored the hope that others had bared away.
However, the situation changed when, at 34 weeks, the baby ceased to move. The hospital was cold for his arrival, concerned that he was too tiny to endure the surgery. The aim was to achieve 37 weeks, but our brave fighter had different intentions.
Sebastian was born weighing somewhat less than 4 pounds, with an energetic spirit. Despite requiring urgent involvements and being cannulated for the majority of his initial 100 days, he overcame all expectations.
Despite being diagnosed with Cornelia de Lange Syndrome, brain disorder, and multiple other health issues, he taught us more about flexibility and affection than we ever imagined.
In spite of expectations regarding what he would never achieve, Sebastian keeps surprising us. His smile brightens a space, his aura offers calm, and he has taught us to hold life with thankfulness and strength. Despite the problems he faces, we would not exchange his identity for anything.
