“Curveballs & Comebacks: Daniel’s Story of Perseverance”

Written by Elizabeth

Before Daniel was born, we were told there was a strong possibility that he would have Down syndrome.  At all future scans, tests and appointments, there were no health concerns, so we truly weren’t sure what Daniel was going to throw at us until he arrived.  When he was born, it was determined that he did indeed have Down syndrome and since around 50% of individuals with Down syndrome have some type of CHD, he had an echocardiogram within hours of being born. 

During his month-long NICU stay, it was determined that Daniel had an AVSD, PDA and a bi-cuspid valve, so frequent monitoring began.  When Daniel was almost three months old, he began seizing during an in-home occupational therapy appointment.  That led us down a path of more hospital stays and observations and a new medicine was added to the daily routine.  Between the seizure medicine and the heart complications, Daniel was tired and lethargic most every day.  

At close to one year of age, Daniel had an occlusion device placed.  Shortly after, he was deemed seizure-free and able to be taken off the medicine.  It was at this point that we were basically introduced to a whole new baby!  Daniel slept less, started interacting more and really started showing us his amazing personality.  It was right around this time when we got our Heart Hero Cape!  Daniel and his big sister Samantha love playing together and she is a major fan of his “special cape.”  For us, the cape means hope and support.  Daniel’s journey may be unique to him, but we know he’s not alone and the cape signifies that for us.

We are so incredibly grateful for the power of community that helps empower and support our family as we navigate the challenges that come along with having a medically complex child.  Today, Daniel is a thriving and meddling 2-year-old and though he’ll always be under the care of a cardiac team, we’re grateful for our current place in the journey.