Owen's Story

Owen was born at CHOP in the Special Delivery Unit in October 2022 and was quickly transferred to the Cardiac ICU. Owen was prenatally diagnosed with several severe heart defects. On his second day of life, an echocardiogram showed that his defects were worse than originally detected. The only viable course to save Owen’s life was to surgically implant a Ventricular Assist Device (VAD) and list him for a heart transplant.

After a few weeks, our wait for a new heart began. Owen lived in his small hospital room, unable to move easily due to the complex machine keeping him alive. His wait was complicated by numerous issues including GI bleeds, numerous viruses, several new VAD pumps due to clots, and so many more issues. The most challenging issue came when Owen was just 7 months old and suffered a stroke. Owen was rushed back to the CICU where we watched him have seizures for the next 2 days and waited to see how he’d recover.

After 9.5 months in the hospital, we got the news that a new heart was available for Owen. On July 19^th, a team of people performed surgery overnight and at 4:30am we got the call that “the new heart is in and beating”. The surgery was a success, and just 13 days later, Owen was discharged home for the very first time on his 10-month birthday. In the time since transplant, Owen has thrived. People who don’t know his history are truly shocked to learn this vibrant energetic child has endured so much. All thanks to our donor’s family.

During Owen’s entire life, we’ve (Owen’s Mom and Dad) been keenly aware of just how lucky our family was during this journey. We had no other children and could focus solely on Owen. Our work schedules were flexible and allowed one of us to work remotely from Owen’s hospital room the entire ten months, we lost no income. Most importantly, we are a ‘local’ family, we live just 30 minutes away (from CHOP). We got to sleep in our own beds every night and never had to worry about accommodations, loss of health insurance, loss of home, or getting behind on bills. That is so rare and many families are displaced for months and months while they make the journey with their critically-ill child - making an already extremely challenging time even harder. Some even lose their homes, or employment during their long hospitalization. That’s why our family is so invested in the mission of Rocky’s House. Anything to help make the experience for another family of a critically ill child go a little smoother, with less worry, is a worthwhile cause.